AnonymousAugust 6, 2010 at 4:45 pm
Hi everyone. My name is J.J. and I also have CIDP. I was diagnosed when I was 13 years old (I’m now 32). Like so many of you, I have had my ups and downs with this. Steroids did nothing for me (tried up to 90mg/day). Plasmapheresis and IVIG both worked well. My treatments lasted about 6 weeks or so before I would have to repeat them, but as long as I stayed on top of it, I was ok. My Neurologist wanted me to try something “new”. I have no idea what it was. It was a one time IV instead of the regular 5 or 6 days at a time. I had what we thought was an allergic reaction to it and ended up staying overnight in the hospital. That was the last treatment that I had and it was 14 years ago. No one could explain it!! Since then, I have worked in some pretty physically demanding jobs and have not had any problems, until a couple of weeks ago. The numbness in my hands and feet has returned (especially in the heat and humidity), fatigue, etc etc. Now its back to square one all over again, not knowing if the same treatments will give the same results. First appointment with my neurologist is this Monday. Thankfully this doctor is still practicing so he will at least be familiar with this disorder. Anyway, just a little about me. Look forward to future friendships and conversations with you all. Take care!!
AnonymousAugust 6, 2010 at 5:02 pm
J.J. they know lots more about this now than they did when you first got it so many years ago. It’s too bad about the return of the symptoms; your old medical records would have the name of the drug that caused your allergic reaction; is the neuro aware of that?
May God bless and watch over you as you go through the procedures on Monday. Try to get some rest and take good care of yourself right now.
Don’t fear; one step at a time.
AnonymousAugust 6, 2010 at 5:50 pm
J.J. First I can assure that God does know about this. Many of up depend on his intervention daily. He will guide and keep you. I also am going to a new neuro on Monday at the University of Texas Health Science Center. I hope he too will have the answers that my local neuro didn’t have. Like so many long ago, even the newer neuros don’t always know the answer, but they are so much better informed by the vast amount on new reseach that has happened since your first bout with this disease. God bless and be with you. We will keep you in our prayers.
AnonymousAugust 6, 2010 at 7:54 pm
You mite not get answers, but the doc will know you are no ‘pushover’ and just go w/HIS flow? You have legitimate questions, and deserve legit answers! This is a time when the phrase: ‘I’ll get back to you later’ will NOT do! And make it clear that you want to KNOW what is happening NOW that’s new, different or more complicating to your already complicated life!
You are really gonna have to assert yourself about now? And seek answers. I truly hope that you do GET answers!
AnonymousAugust 6, 2010 at 8:51 pm
thanks for the advice. yes ive started a list already. no, im not gonna “wait and see”. My referring doctor (yes i had to have a referral to see the neurologist that ive seen before) wanted to start the steroids again. i kindly declined and asked for my referral. you people are awesome!!!
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AnonymousJune 6, 2010 at 3:21 pm
Hi, My name is Michael, 45 years old.12 weeks after being diagnosed with GBS, My neurologist changed it to CIDP. I was hospitalized for nearly 40 days during that 12 weeks. That was in two different hospitals and one rehab center.
During that time, I insisted that I was getting weaker but they kept telling me it was just my particular strain of GBS. Finally I was able to see a neurologist who could count and realized that my deterioration was not GBS, but CIDP.
I am going to start IVIG again, steroids and Immuno suppressors. I have a question about IVIG. Does anyone have any input on whether different kinds or Brands Of IVIG are more or less effective? If so, please share what you have learned. I’ve seen some posts in this forum already but I’m looking for new information.
Thank you very much I’m glad I found the foundation.
AnonymousJune 6, 2010 at 5:47 pm
IVIG is IVIG, … the way they differ is in the additives to them (maltose, sucrose, etc.). The additives are what can cause different side effects and the toleration of one brand over another.
But if you are receiving IVIG for the treatment of CIDP, that portion doesn’t matter, according to my Dr -who is on the Foundation Board.
edit: If you are diabetic or have renal problems that will determine which brand of IVIG is best suited for your condition.
AnonymousJune 6, 2010 at 5:57 pm
Welcome to the forum. I’m sorry for what you have been through. My husband has CIDP-MADSAM and he was diagnosed in 2007. He has had monthly treatment with IVIG since diagnosis (actually started on q 3 week treatment about 7 or 8 months ago). He has had all sorts of different brands as he generally would just take what the blood bank sent up to medical day care. He didn’t seem to notice any difference. Over the last couple of months, they started sending up Privigen. He has asked his doctor to order that one specificially as they can safely run it through faster than other brands. He has had good response to all brands. No headaches at all if he knocks back lots of water starting 2 or 3 days before treatment and during treatment. IVIG is my husband’s only treatment as he leans toward high blood sugar and has beginning cataracts so he isn’t a good candidate for steroids, and he had a bad reaction to Imuran when they tried that a couple of years ago. According to research literature Gammunex is the only IVIG that has had drug trials for people with CIDP, and the trials all showed that Gammunex worked. Hubby did fine on Gammunex too.
AnonymousJune 6, 2010 at 6:46 pm
you are here. I’m surprised that no one has prescribed any physical therapy for you? Being in bed a couple of days, not to mention weeks does reduce your muscles’ abilities to function, let alone function normally. I would definity ask: WHY NOT?
As for IVIG versus other treatments? First I have to ask about you ‘going to try IVIG again?’ Did you have any side effects? Or didn’t it ‘do’ anything? IF it didn’t do anything? It mite be because you didn’t get enough to really work.
As for brands of IVIG? Some folks cannot tolerate some brands at all well because they are either intolerant of some IGg-M or IGg-A components in their IG product.
Most products now have some glucose or sucrose forumla as the ‘liquid agent’ to enable IT to get into you easier. I’ve no problem? But I did when one brand used to use saline as the ‘liquid’…I tasted salt and coppery for many days after infusions. It IS key to hydrate more than you thought possible prior to infusions! I boost it by slugging a small bottle of Gatorade, just to be sure.
Gammunex is the only brand of IG that went thru the clinical trial and approval process at the FDA. Prior to that, all brands were considered ‘off label’ use and many insurances wouldn’t approve it… even tho it’s been used for GBS and CIDP for over 30 years. Go figure?
IVIG works for between 40-60% of the people who try it. Steroids also have their plusses & drawbacks so read up thoroughly on all the few different options we have. As for brands? I react better on some brands than on others! AND, no hospital or other provider should substitute the prescribed brand without letting you know AND let the prescribing doctor know in writing! It’s federal and state law in the US and the tricky part is getting proof. I was substituted brands for several months and I thot I was going crazy, because IT wasn’t working! Once I changed my IVIG provider it made a world of difference!
Good luck Michael! You are young to have gotten this stuff! My heart is with you for sure. Don’t be afraid to ask questions, none are too silly or simple or anything! Go get that PT! It’ll be very HARD work, and you will have to [MUST] learn your limits? But be sure to ask for ‘home exercises’ and be sure the doc prescribing the pt puts THAT on the orders-don’t leave the office without that part. Why? Because at home there are bits of simple exercises you can do at your own pace and not get exhausted in the ‘doing’ like you would at PT. Example: A weight leg lift? Get your own weights [cheap on sale at K-Mart or the like] and at PT they want 20 reps? Do reps of 10 3-4 times over the day…build it up to 15 and so forth. It works and it’s easier to do at home at your own pace. Hope this helps? Let us know what’s going on! These are good people and we all don’t want another to have to ‘reinvent’ this wheel!
AnonymousJune 6, 2010 at 9:17 pm
Thanks for all the encouragement and information.
After my initial GBS diagnosis, I had five treatments. When my symptoms returned I had three more When that didn’t slow my decline, ended up back in the hospital where I had five plasmapheresis. Then three weeks in a rehab hospital .I’ve been home since May 13 And getting two OT and two PT sessions during the week. Luckily my step son helps me do my exercises every day
I will check to make sure the prescription matches the dose and brand. And watch for side effects too!
AnonymousJune 7, 2010 at 8:03 pm
You must have one special step-son! Let HIM know that others appreciate him too! Both of you are lucky.
How old is he? or would he be mortified to have that put ‘out there’? 😮
Go at it, and let us know which exercises your’e doing….others can learn a lot from those exercises themselves.
Please realize? That getting a sort of diagnosis and on IVIG? in the time frames you’re talking about are the equivalent to beating land-speed records in the motor world! You’ve achieved almost Indy500 records? Docs usually go into this on a glacial pace! You have to kick things up a notch by seeing other ‘experts’? But then it can be a medico-political landmine field of ‘differences of opinon’! IF you should seek another opinon? Just say: We aren’t communicating that well. And, leave it at that, w/no other elaboration-so you don’t burn bridges behind you as you seek some answers.
My own neuro? He’s got the CIDP diagnosis, But…once in a while he puts down another agressive poly neuro name down on his ‘sheets’ and I just ponder…am I MORE or LESS of a problem? I suspect that it’s the kind of neuro chinese menu option that appeals to the doc on that day! 😉 To do otherwise, I’d become crazy! I’m not THERE yet! What is the phase of the ‘moon’ When I see the doc? How many crisises did he attend to before seeing me? I make allowances, he gives me time [IF I’M ORGANIZED!] to spurt out my problems and address one or two…usually w/those dreaded ‘more tests’!
We as humans are amazing and quirky animals? We not only are unique-each of us! But we are soo varied that when we get sick, we do it quite thoroughly! Those of us with GBS & CIDP have really done that quirk factor quite WELL! Hope and hugs!
AnonymousJune 8, 2010 at 7:29 pm
For me, IVIG has been mostly a great treatment. But key to that all has been the fact that the Numbness crawl up from my legs to my trunk was stopped dead and only recently has ‘begun’ again. After 6 years. The less Numb to the trunk? The better for sure!
For me, again, all else has been a bonus? I take each day as a gift, in that I can get up and out of bed on my own steam…tho slowly? And just get up and go! Being mobile is a treasure most humans take for granted! WE KNOW OTHERWISE!
The only good thing about the ‘numbness’? Is that when I fall? I feel things a lot differently from normal folks! That aspect is very hard to convey to ER docs & nurses? No matter how you try? Blank faces! I truly hate those blank faces…
Keep up the fight – it IS a fight, no doubt about it. Only YOU and your strength of spirit can determine some succesful outcome. It’s not easy, but it can be done with enough determination and ‘gumption’.
Hugs and hope and soon!
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AnonymousOctober 16, 2009 at 9:57 am
My name is Jaymes Holden and I am a new to the forum. I would like to share my story with you all. I am 42, married to my high school sweetheart and have two great kids, 20 and 16. I am a police officer with over 20 years of service, avid weightlifter, runner, and triathlete.
May 5, 2009 I started feeling my fingers on my left hand tingle and my toes started to fall asleep. I had just returned from a week long sniper school, where I had a 100 degree temp for the entire week. I thought maybe I was just tired from that week, and contacted my doctor. The family doctor had told me come in the next day. The next day I could hardly walk and my wife had to help dress me. When the family doctor looked at me he sent me straight to the emergency room.
The ER doc ran a bunch of test on me and then stated GBS may be causing all I was going through. He did the spinal tap and confirmed his fears. My wife nor I had ever heard of GBS before this and my wife quickly researched the topic. I was then transported to CMC main in Charlotte NC where I was intibated because I was having a hard time breathing. In just 24 hours I was paralyzed from head to toe, I could not even blink my eyes.
I started to feel fear rise up and the called upon Jesus. My faith in God and my wonderful family was all I had left. As I prayed silently to myself I could see my wife crying with friends and family. I did not want to leave just yet. My Chief, and other officers were gathering around praying and the journey had begun. The peace of God that passes all understanding had covered my wife and I.
After 6 weeks in ICU with a trach, feeding tube and going from 235 to 170 pounds, I was transported to rehab. I was in rehab at CMC main for 5 more weeks and with the great staff I walked out of the hospital in July 17, 2009. It was a slow hard walk but a walk all the same.
The 5 months since have been hard on my family, but I am back to work. I have run 7 miles, many short 2 and 3 milers. My feet still hurt, toes numb and the three fingers on my left hand are numb a bit. I thank my Lord and savior Jesus Christ for healing me the way He did. I want thank God for 22 years of marriage to my best friend, and soulmate who was there for me 24/7 taking care of me, my wife Kim.
Thank you for allowing me to go on like this.
AnonymousOctober 17, 2009 at 8:26 pm
Wow, that’s some recovery there! Glad you are doing so well!
I used to be very athletic too and my fine-motor skills were highly developed, before GBS.
I can still walk though, with supports, and when I’m asleep, I often dream of running down the street effortlessly or riding my bike for miles the way I always used to do, before GBS crippled me. I haven’t been able to sell my bike, even though it’s been 2 years since I last rode it. Maybe someday I’ll be able to ride it again. Maybe someday I’ll be able to walk again.
Seeing your story here keeps me hoping! 🙂
AnonymousOctober 19, 2009 at 2:56 pm
Hi Jaymes…….how is your day going? I see from your post that you also went on the “GBS Diet”…….what a way to lose weight. I was a light 145-150 when I went in..got down to about 120…..that was pretty nasty looking! I congratulate you on how far you have come on your recovery. It was nice to read about how your faith and family carried through this ordeal. I know that without my faith and family I would not be where I am today. My wife and I have been married 36 years and have a 20 year old daughter. They both stepped up to the plate to help me. As a parent I often wonder if all the things we teach our children are sinking in. I can honestly say that our daughter sacrificed a lot just to help me and I won’t ever forget that.
I can remember being read a lot of the Psalms, Proverbs, and I Corinthians chapter 13, many times over for reassurance…….Yesterday our pastor used me as an example in his sermon on how faith can help a person during hard times. I was truly humbled…….hope your week off to a good start…Tom
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AnonymousJuly 6, 2009 at 8:21 pm
Hi, my name is Jet and in 1998 I first saw a neurologist for my tingling/numb feet and hands, fatique.and leg pains.He could not diagnose me and said I had some kind of sensory motor neuropathy. Over the next 8 years everything was bearable but 2 years ago it all started to flare up again but 10 times worse. I went to another neurologist and was diagnosed with CIDP. I have been on monthly IVIG ever since. It seems to have relieved the fatigue but I am now experiencing extreme pain in my arms. This started in my right arm in February and is now affecting my left arm. I cant even lift the pillows at night. I am having more pain in my legs when walking and now walk with a gait. I think my run was left too late for the IVIG or maybe my dose needs to be increased… I have 24g and weigh 57k. Does this sound enough?
July 6, 2009 at 10:02 pm
In answer to your question, YES!!!!!!!!!!! you need more ivig. A loading dose for your weight = your weight X 2. That is 114 grams. Unless of course, you are getting 24g over five days monthly. Please clarify. If you are still having that much weakness and getting 24g/5days monthly, you may need to go to 24g/5days every two weeks, or what ever works best for you. It is trial and error until you figure out what your body needs, regarding spacing out. If it is 24g/monthly, it will not put a dent in things. Good luck, keep us posted.
Dawn Kevies mom
AnonymousJuly 9, 2009 at 9:57 pm
Hi Dawns mom, Tks for the reply. I am receiving 24g per month. I have just been onto the Intragam info for the Australian Blood Bank (who supply it free) and they recommend the amount of 0.4g/kg..(.though 2g/k on other sites appears to be what is needed).This much is prescribed as stocks are usually low. I will speak to my Neurologist next month and see if I can get it upped. Thanks Jet
July 9, 2009 at 11:08 pm
sorry no info
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AnonymousAugust 21, 2008 at 5:42 am
Hello everybody 🙂
I’ve been reading the forum for a while now and found it very helpful. I don’t know what I would have done without your posts in these difficult times.
Let me introduce myself: I had the Miller Fisher variant of GBS, my Neuro said Miller Fisher/GBS so I guess they kind of overlapped ( my eyes, facial muscles and throat were badly affected but also my feet and hands, had no reflexes). I was diagnosed in May 08 and am still recovering. My residual symptoms are: double vision (and my eyes get easily tired), weakness, lack of stamina and fatigue (I need to take naps and lie down during the day after minimal physical or mental activity). My illness progressed very quickly, in a matter of 2 days I was admitted to hospital and moved to the Intensive Care Unit. I was in hospital for 2 weeks. While in hospital I lost the ability to swallow and speak and I was intubated for one week, my voice is very weak and hoarse, cannot really talk much, it turns out that I’m now using the wrong muscles to produce my voice and straining my neck too much, I’m due to start Speech&Language therapy.
I’ve been off work since I got ill and I am still not fit to go back. I would like to ask you all how long did it take before you could go back to work and whether you went back full time or part time. I know it’s early days for me, it’s just been 3 1/2 months, but I’m worried that I may not be able to work as much as before for quite some time considering my current state and how slow recovery is. I know I must be patient and I’m coming to terms with the fact that my life will have to be different, well, it already is different. Does anybody know how long it takes for the myelin sheath to regenerate on average? And what about the fatigue?
Any advice would be greatly appreciated.
AnonymousAugust 21, 2008 at 8:28 am
Welcome to the site! I have CIDP and not GBS and it will be hard for me to answer your questions. But I did see a posting not too long ago about the mylelin sheath. Can’t remember the number though but it was slow in healing. Not every patient is the same in recovering though. Each person is different. Some in here got diagnosed and 3 weeks later doing great while others in here it took them months and even years to recover. And then some have really never recovered completely.
I know you worry about work and want to have that life back again and we all have bills in our life that worries us. We have to eat too! Which can be a strain on us and stressful for us all not knowing our futures.
I would talk this out with your doctor first. He might not think you are ready for working just yet or he might say you are. But he may limit your work.
One thing you have to keep in mind here! Your body is more important than your job right now. You can always go back to work when you get well if it’s okay. But your life on the other hand is more important and more valuble! I hope you get well soon and see a fast recovery and do get back to work again. Just don’t want to see you pushing to early and landing in a relaspe. That would not be fun at all! I wish you my best in here and hope your back on your feet very soon!
AnonymousAugust 21, 2008 at 9:22 am
MDM you are in the early stages of healing. When I come here with the same things as you had I had read that the body needs horizontal rest to heal the nerves and physical exercise or rehab to keep all the joints and muscles stretched and workingl You will notice that range of motion is a big thing with GBS. Use something like Yoga to keep your body moving. Strenght training for me did not work until the body was healed enough and the nerves were carring the signal to the muscles. But I did keep things moving until that process took place. Listen to your body and do what you can, the rest will fall inline later. I was told that the covering on the nerves regenerated at a rate of 1mm per day so for the average 6 ft guy that is a long recovery. But what that did not say is how badly the damage was to that area and also to the nerves. Everyone is different and GBS and the variants are something that can not be rushed to heal. Be aware of what you can do at home and what you do today and how it effects you tomorrow. As far as working I am not able to return to work yet but I know many have returned to work. Depends on the stress level and the physical and mental requirement your job requires. See how things develop and to give you a time frame of when you can return to work…go grocery shopping or sit at the computer or drive your car. See how those things wear you out. I am not able to be away from home that long. An 8 hour day would do me in. I am just now getting to the point that I feel I might be able to work half a day. But that is me! I would not be able to do the orginal job but I might be able to do a sit down job on the phone or computer. I am not able to stand for a long period of time yet but I have been to stores where the cashiers are allowed to sit on a stool. As far as lifting that strength is starting to come back, but the ability to take things off a shelf is still not there. I can reach up and get something off the topshelf in my kitchen or closet but after a certain weight it crashes to the ground. I am still working in rehab to strenghten areas not yet back to a safe strenght to let me be out in public transportation or steps. Each day my abilities are not consistant with the week before. One day I can walk down the hallway to another office and the next week I can not walk even half that distance. So listen to your body and talk to your doctor and rehab team to see what your limits are. I was told not to expect 100% recovery and they are not able to tell me at what point my body will stop getting better. This has been the best Summer for me so far! I am able to do more and know that I have had some really big jumps in progress just in the last 6 months. I can get up without having to pull myself up on furniture or having assistance if I should fall. Just that has made me more independant knowing I can recover from a fall in a parking lot or in the middle of a room or my yard. The fatigue has really got so much better that I don’t think of it at being a factor in my daily life now, but going back to work I am sure that would increase to be a factor. Working or having a busy schedule, I don’t think I would recover from today to be able to finish the same level the next day. I do rest in between days that require more activity, but for the adverage day I am doing much much better with this new lifestyle. My vision has finally returned to a good level that I don’t have to have my eyes tested for a year now! So as you can see I have had big leaps of coming back this year. I sincerley hope it does not take anyone else this long to recover so they can perform their dailiy duties and resume their occupations. I can see that everyone is recovering differently. Be patient others will be here to post their experiences. Welcome to the boards and I am glad you started to post here after reading. Don’t be shy! Many of us are experiencing the very same as you, we just have not asked the same questions yet.
AnonymousAugust 21, 2008 at 10:45 am
Welcome to the family. GBS also stands for Getting Better Slowly. As others have said, each patient is different and heals at their own pace. Make sure you register with the foundation and they will send you information that will help answer a lot of your questions as well as posting on here. Celebrate the little accomplishments and keep a positive attitude. Try to get plenty of rest and realize that just because your life has changed doesn’t mean you can’t enjoy it.
AnonymousAugust 21, 2008 at 11:43 am
Welcome, I am also a newby. This is a great web site with many very wondereful people. Ask anything you want & someone will try and answer your questions.
I am still recovering, diag. 16mo. ago. But I take one day at a time and try to not over do & rest alot. I will prob. not be able to retur n to work. Maybe in a different field. I was a manager in a busy emergency room. Being a nurse there are many things I can do when my health allows.
Just hang in there and come aboard and talk & vent away.
AnonymousAugust 21, 2008 at 4:17 pm
Hi Kitt! That is what baffled about them saying CIDP. When I got the attack on my nervous system the vision in my left eye got really bad. Just recently saw the eye doctor and she is running more test on me in September. She saw something wrong with the left eye and is keeping a chack on it. Wants to see if it improves or get’s worse. This might be GBS instead of CIDP that I have but not sure. Hopefully soon I will have the answer. Very useful information that you gave out! Thanks for sharing this!
AnonymousAugust 22, 2008 at 5:23 am
thank you all for your messages
LindaH, yes, I must admit that I sometimes worry about the bills. Until very recently I thought I was going to go back to full time work within 6 months from the onset of the illness simply because I need the money. I have now realised that it’s gonna take much longer for me to be fit for full time work. Right now I couldn’t even use my voice for work. I’m learning a lot with this awful experience and I’m starting to understand what really counts and also what my limits are but it is frustrating at times, I guess I’m still a bit shocked by the illness.
I read that you have 10 cats. Wonderful! I’m a cat lover myself. I like the fact that every week you take in 2 different cats so all of them get equal attention, they must be very happy cats.
Kit, thanks a lot for your advice, I do yoga often and do a little physical activity everyday. I find yoga very helpful not only for the body but also for the mind. I still need to lie down and sleep during the day after minor activities. For example, I go shopping in my local store that’s only 5 minutes away and I come back home feeling really tired after just one hour away, it’s not just physical, it’s also mental exhaustion. I agree with you though, I have a good day but then I have a few days when I feel tired all the time no matter how much I rest. I’m happy that you’ve improved so much in the last months.
Stormy, thanks for reminding me that it takes time to recover and I must be patient. Most days I’m ok with it but sometimes I get frustrated. This forum has helped me so much through these difficult times.
thanks again for all your words and I hope that your health and mine will improve.
AnonymousAugust 22, 2008 at 8:36 am
Hi MDM! The only bad thing about being sick and having an experience like you have had is the frustration of not knowing your future. You worry about your future and at the same time you worry about the food on the table. I had a $30000.00 a year job back in the 80’s and back then that was good money. Was the bread winner in the family. My job was very strenous on me! I had alot on me with my job. I used to work for a place called Jean Nicole and was a District Manager for the Company. So I had to travel alot from Store to Store checking on the employees and the stores. Plus hire new managers and train them. I had to cover 23 stores. My hours each week averaged close to 75 hours a week. Very tiring! And alot of walking!
I ended up having to quit because I just could not do it anymore and was on the verge of being let go because of spending to much time out for illness. And I was a very devoted employee with them for several years.
Then I tried part time work and that too was making me sick. My body just would not let me work. When that happens, you get depressed and you feel useless. Then you worry about the future. I myself became a major worry wart! I was worried about everything! My husband back then was an auto mechanic and used to play in a band. He went back to playing his music so he could bring in extra money. Disability.. took two years for me to even get in the system. So we had to struggle for two years until I started getting a paycheck again.
When I got my first SSD paycheck, I cried! My income when I was working was $625 a week but after taxes, I brought home a little over $500.00. I was used to shopping, driving, enjoying myself to suddenly see this measly $457.00 a month paycheck. To me it was an insult! But I had no choice but to take that check. And the way disability treats you while you are trying to get on makes me wonder how many died because of the system we have in the US and never even got a chance!
One of the hardest things to adjust to when you get sick is not being to go back to work after you were used to it all those years. And then the bills come in and you get all upset about that. You worry about the others in the house and how everybody is going to adjust to your illness. The first two years of being sick is like a Mental and Physical Challenge. Here you were with a life to suddenly not have one! Clinical depression can set in and everything else. I truely understand what you are going through. Certainly not a 24 hour virus that you deal with and then go back to work in a few days. This is much more challenging!
And what makes me mad is when a person gets this sick, they don’t need this kind of stress on them. They need to take that time for recovery and healing. Not worrying about money, food and bills! I found out real quick how my system works in the US. Instead of a person that needed human compasion, I found out I was only just another number that the government deals with everyday! Only a number! Your feelings get hurt really bad when you get treated this way. Here I was with a name and a life trying to be successful and be a part of the system. To suddenly become a number! I hope you recover from this quickly and can go back to work. But if your not able then you do what the next step would be! I know you have all this hope right now and want your life back. But you may have to except that not all of it will come back the way it was before! Just don’t want to see you getting let down here. Good luck and I hope things go well soon
AnonymousAugust 22, 2008 at 10:18 am
Linda is so right in all she had to say. I had worked at the same hospital for 34 yrs. I have been an RN for 21 yrs. I was the day shift unit manager in the emergency room. We were a very busy ER. Saw usually well over 40,000 pt’s a yr. My job was very stressful, not only mentally but physically.
I was hospitalized for 1 mo. I had been home about 2 weeks when my boss called me,(not in person), to tell me they were replacing me in my position, because it was a management position & I could not give them a time frame when I would be back to work. I wasdevistated. This was my dream job the job I had worked for for several years. right where I wanted to be.
But now only 1 yr. after becoming ill I received a letter in June from the hospital telling me I no longer will be employeed with them. So the moral to the story even after 34 yrs. of employment you are just a number to some people. I would have thought they could have given me a little more time to recover. Am I anywhere ready to go back to work NO, but at least I would have felt like someone at least cared about me & my welfare. NOT!!!:rolleyes:
So MDM I hope things go better for you. I hope your recoverey con’t to zoom along & you are back to work when you are ready. Get plenty of rest and Good Luck!
AnonymousAugust 22, 2008 at 12:43 pm
Hi MDM. You and I sound like we had similar experiences. I too, had MFS primarily, with some GBS – which I got from the campy bacteria last September. I had double vision, the left side of my face was paralyzed, I couldn’t blink my left eye, and had limitations in actually moving my eyes around. It came on quickly like yours and many others. I, too, was in the hospital for 2 weeks.
What treatment are you/have you received, e.g., plasma pheresis or IVIG?
I had plasma pheresis for 5 weeks. My neurologist pushed me to go back to work (his argument was that it would be good for my immune system to get back into the swing of life), but I pushed back until I felt strong enough to do so. (I was out of work for 10 weeks.) Even so, when I returned to work, I still had double vision and facial paralysis. Some function had returned, but the majority had not. At first I was self-conscious to return with a patch and unable to smile, but people were kind and accepting.
I think the first two weeks I worked 1/2 days, then kept increasing the hours each week. I think within 4-5 weeks I was back full time.
A few weeks after first returning to work, my double vision resided, and within a few weeks after that, I weaned myself off the patch (which I was using, since my eye was taped up, because I couldn’t blink). Slowly I have recovered function.
Before I went back to work, I slowly got back into working out. I mean SLOOOOWWWWLLLLY. At first, I barely broke a sweat, which felt a little counterproductive. But I listened to what my doctors told me.
By the fifth month, I had worked up to an hour of cardio, but the next day I would be exhausted. Now it’s 11 months after I first got GBS and I’m on the bike an hour each morning, 5-6 times a week. I guess the lesson I learned is to listen to your body (e.g., rest when it tells you).
The other lesson is that everyone’s experience is different and unique. Some people can return to work immediately, others, like me, can return within 2-3 months, and others can take even longer. It’s all very individual. Figure out what works for you, and don’t give up on your healing.
I wish you the very best.
AnonymousAugust 22, 2008 at 3:30 pm
MdM ,welcome to the site. I had GBS back in october of 07. Was in wheel chair and walker for a couple of months. In the hospital for 5 weeks. I am 54 and in fairly good shape.I like you was very concerned when I would come back to work. My job that was lined up for me was given to someone else.I tried to give them ,at work ,a time frame for me to come back.The nuro told me to tell them I would be back in the spring of 2008. So thats is what I told them. Well they then put a job aside for me for the spring. In jan I had made some huge progress and the nuro told me I could go back to work even tho my hands, chest ,and feet were still numb, .
They had nothing for me at that point so I took a trip to florida with my camper and kept in contac with my boss to see if anything came in for me. In march a job finally came through and they called and said start. Well ,really I was at a point were walking for just a few minutes caused a lot of pain. I told them at work I was 99 % when really I was at 85%.It is now august and I am on my third project. My numbness after 4 months was gone exept for my feet. I come home with feet that are numb and tired and sore. I get out of my truck and can barely make it in the house.
But I can say now I am at 95%. I can run ,jump ,anything but with pain! I take a vicodin at least 5 days a week in the evening to calm my pain and realax.I think that it is ,how much are you willing to give it a go ?and just see what you can do. Every few weeks I try getting off the vicodin. After the 2nd and third day I get very hyped up and restless. So I detox myself and go through that and then when It warrants I start back on the vicodin
I know everyone is different and you have to do what is right for you.But for me this is what I am doing. Take care
AnonymousAugust 23, 2008 at 3:18 am
I too had GBS/MF variant and was completely paralysed from head to toe! I was in hospital for 7 weeks (4 in ICU, 1 1/2 in a general ward and 1 1/2 in rehab) I was able to walk on my own when i left hospital and my only real problems were fatigue and lack of strength, and i still had double vision. I probably could have gone back to work at 3 or 4 months but decided to wait until the new year. I went back to work in January 2007 about 5 1/2 months after i got GBS.
I have to admit my job is not strenuous ( a desk job) but i went back to work 3 days a week, same as what i was doing before i got sick. I also have 3 kids so that is like a second full time job! I was lucky, i work for a small company in a country town and they dont get people with my experience every day. Not that i think that would have mattered, they woudl ahve done the same for anyone, they are that sort of people. I had only been there for 3 months when i got sick but they held the job for me as long as i needed.
We are lucky here in Australia, we have a public health system that works fairly well as well as a private system if you want your own doctor, private rooms etc. Everything is paid for in the public system, so you dont come out with huge medical bills etc. (only problem is there can be long waiting lists) We also have a fairly good social security system. As long as you get a medical certificate saying you are unfit to work, you can get a sickness or disability benefit. It is the same as unemployment benefit – not a great deal but enough to live on in the short term. When you have been through something this stressful the last thing you need to worry about is money and returning to work before you are ready.
From what i have read, MF seems to have a pretty good recovery rate. Unfortunately rate of recovery varies form one case to the next and there is nothing you can do to speed up the process – if you do too much too soon you can do more harm than good. So fingers crossed, you will continue to have a good recovery
AnonymousSeptember 9, 2008 at 5:08 am
thank you all for sharing your stories and for your precious advice
my computer broke down and I was not able to read the forum, I missed it so much, now I have some catch-up reading to do!
LindaH – Thank you , I can relate with a lot of what you say you felt at the time.
I think what most upsets and worries me is the uncertainty of this whole situation. Money is a big concern and also not knowing when my voice will return normal and the fatigue will reduce and I can have a ‘normal’ life. I get angry because like you I think that we should be left to heal in peace.
Cathy – I’m so sorry for what happened to your job. I’m afraid that you’re right, in this society we are just numbers.
PKS – In answer to your question, I was treated with 5 doses of IVIg
Ron – Thanks for your advice. I thought about what you said, right now I’m not fit to go back to work, I’m still too weak and the physical and mental fatigue are a big problem plus my voice is not good. It’ll be hard to work even when I’m better and I know I will feel some pain and fatigue and I will have to live with it.
Montanasmum – Here in the Uk we have a public health system too, the problem is that usually the waiting time is very long. For example I had to wait almost 3 months for my appointment to check my voice. I think that not knowing what was going on with my voice for so long made matters worse for me.
I started the speech & language therapy last week. For now I was told to drink more water and do steam inhalations to moisten my vocal chords. This week they’ll teach me some voice exercises.
AnonymousSeptember 9, 2008 at 8:49 am
Hi MDM! So glad you are going to take a little more time to heal up. I know you are worried about everything right now but the most important thing is you! You have to be ready and if your not ready, it’s only going to hurt you in the long run.
I hope you get your voice back soon and be the person you were before all this happened to you. One thing I have learned in life is that we all face challenges. Somewhere down the road no matter who we are will face a challenge in our lives. Sometimes those challenges are alot harder on one than the other.
Illness is a hard challenge to have to deal with. Please keep us posted on how you are doing! I will keep you in my prayers and hope that you soon get recovered from this nasty illness! Hugs MDM! Take care!
September 15, 2008 at 4:55 pm
Hi MDM: It took at least 7 months before I could go back to work, I should not have gone back then, howver, they were going to fire me. I worked 12 hr. shifts, which was almost impossible. If if were not for the girls I worked with I would never have been able to do it. They choose to work many of my hours. They were great, administration was another story. Take your time, I fould out that a job is not worth your health.
AnonymousSeptember 15, 2008 at 9:29 pm
i had rapid onset but also a rapid recovery (by GBS standards) which i have read is common wigh MF variant. I was completely paralysed and on a vent within 48 hrs. I spent 4 weeks in ICU, 7 weeks in hospital in total. After i left ICU it only took a few days to be up and walking with a walker. I had 10 days of rehab and was able to walk out of hospital all by myself. It took another week or so for the double vision to clear up but it did do overnight, so by about 2-3 months after onset i was pretty self sufficient again. I still had fatigue so had to rest during the day but about the 4-5 month mark felt i was ready to go back to work. I waited until the new year, which ended up being just under 6 months after onset. I was only working 3 days a week 9-3 before but resumed my same hours. 2 years down the track and with all 3 kids at school now, i have increased to 4 days.
Not everyone is able to return to work as quickly as i did but hopefully my story will give you hope that there is light at the end of the tunnel. I came home 2 years ago this month and have reached a point where i dont think about GBS every day … i know the experience has made me who i am today and in a funny way i am glad i went through the experience as it taught me a lot about myself, but it no longer dominates my life.
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AnonymousAugust 7, 2008 at 10:14 am
Hi! to all,
My name is Cathy C. I am 53 yrs. old and I was diagnosed with GBS in April 2007. I spent 1 mo. in the hospital. 6 days receiving IVIG and the rest in acute rehab. I can only walk with a rollator. I was doing fairly well even down to using only a quad cane and in Nov. 2007 I had what they called a “relapse” spent another week in the hosp, receiving IVIG again. I then went to another neurologist for a second opinion and he diag. me with acute sensory neuronopathy which he said was the rare form of GBS. Has anyone else been diag. with this? If so please respond to me I would love to talk with you. I am receiving IVIG every 3 wks. at this time. Does it help? I’m not sure. All I do know is I am so ready for all of this to be over. Will I ever get back to my normal self I just wonder. They tell me it just takes time. It seems all I have is time.
Cathy C. 🙂
AnonymousAugust 7, 2008 at 12:23 pm
Welcome to the forum, there are lots of people here with lots of answers so just ask questions! Sounds like you have had a long road. Recovery from GBS is slow. We have renamed GBS to stand for “Getting better slowly!” You will have to define “normal self” I don’t think any of us are “normal”! You will be changed by this life experience. Your question about “acute sensory neuronopathy” I cannot answer. Maybe someone else will have something for you.
August 7, 2008 at 1:01 pm
Welcome to the family. I am so glad you found us…of course we all would rather that none of us have to “find us”. I am sorry to hear you are having a hard time. I am sure that you will find answers to all your questions here as well as finding comfort in knowing you have support and are not alone.
AnonymousAugust 7, 2008 at 2:50 pm
[QUOTE=JanB]Welcome to the forum, there are lots of people here with lots of answers so just ask questions! Sounds like you have had a long road. Recovery from GBS is slow. We have renamed GBS to stand for “Getting better slowly!” You will have to define “normal self” I don’t think any of us are “normal”! You will be changed by this life experience. Your question about “acute sensory neuronopathy” I cannot answer. Maybe someone else will have something for you.[/QUOTE]
Yhank You Jan for responding to my post. I m just so sick of this whole GBS thing. How long have you had GBS and have you had full recuperation?
AnonymousAugust 7, 2008 at 2:52 pm
Welcome to the family. I am so glad you found us…of course we all would rather that none of us have to “find us”. I am sorry to hear you are having a hard time. I am sure that you will find answers to all your questions here as well as finding comfort in knowing you have support and are not alone.
Thank You for responding to my post. I nam looking forward to bing part of the GBS family. I have dsuch great family support but I feel sometimes so nalone because they just don’t get it.
AnonymousAugust 8, 2008 at 12:37 am
First off, I would like to welcome you to the forum. Many of us come here because as understanding as our wonderful family members are, they can’t ever really get it. What we have been through, what obstacles we face each & every day; the disability part, the fatigue, the pain, the always wanting to be the person we once were. I am guessing that what your neuro is trying to tell you is that your form of nerve damage is more permanent, that the axon itself is damaged. Or the fact that you are still getting IVIG makes me wonder if he is referring to a more chronic form of GBS, such as CIDP?
Many do make what doctors considerer a “full recovery” from GBS. The number is supposed to be 80-85%. But I do think that many of these people still suffer from residual fatigue, most people seem to. Until you are two years out, I would keep up hope for a full recovery, as damaged nerves can take that long to heal. After you pass that mark, something strange begins to happen… people tend to become more accepting of things the way they are.
I was an excellent athlete when I got hit with a severe case of CIDP. If someone would have told me that I would spend 2 1/2 years in a power chair with no use of my hands at age 48 I would have never believed it. For the past 4 years I can now walk with leg braces & a cane. But after 6 years I have accepted this as my new norm. I doubt that I will ever completely be content to have this illness, but I no longer mention it to my family. I guess I am so used to it, can hardly remember what it was like to run, or even walk for long distances. I do hope you make a full recovery, however…
AnonymousAugust 8, 2008 at 9:31 am
Thank you so much for the encourgement!!! I need all I can get. I fell this morning shortly after getting out of bed. It’s the second time I have fallen this week. I am due the 12th for my IVIG. My husbnd doesn’t believe it works but I do for at least 3 weeks.
So Pam how long have you had CIDP and was it GBS first?
Enjoy talking with you!:)
AnonymousAugust 8, 2008 at 10:52 am
Welcome to the forums. This is a great place to be! I had GBS 25 years ago and am one of the lucky ones who reovered fairly well. I had a few residuals but nothing that stopped me from living my life, raising a family of four and going back to work. I am experiencing residuals now and have for the last 3-4 years that have intensified. I believe this is in part to not taking care of myself, more because I was never told a lot of the things they know today. If I could give you any advice, it would be to never push yourself beyond what you can do. To not force thigs because you think you have to. I did that and I feel that is why I am where I am today. We have to push a little, but I pushed a lot and may have caused myself more harm than good. I did not rest when body screamed at me, I did not slow down when my body weakened.
I know better now and I do better. Rest with this syndrome is so important. Take care of yourself and keep us posted on your progress. Again, Welcome!
AnonymousAugust 8, 2008 at 5:27 pm
Sorry to hear about the gbs and the relapsing (sounds familiar), but glad you found this site to share with us your story, and hopefully all can learn something…
Sounds like it really has been a long road getting back for you.. Did you ever find out what caused yours?, and did it come on quick or slow progressive.. I think a lot of our recovery depends on a lot of factors working for or against us.. One is how healthy pre gbs? our age? lifestyle? attitudes? etc….It sounds to me like you are still improving overall, so try to take it in stride, and like Pam says we are healing well into 2 years…
Now the following, probably won’t/doesn’t apply to you, so take with a grain of saltines….
Good luck on your recovery, we’re all in this lifeboat together!
I’m roughly in your age group (46), and came down with gbs 10/07, and have had several residuals/relapses? post octocber… Currently, I’m diagnosed as cidp and being treated with ivig (two every two weeks), and 500 mg methylpred.. Currently, I think its the ivig holding things together for me… The goal is to ween me off the ivig, within this year.. We hope!
There are a lot of gbs’ers out there I am sure will be happy to share their story with you Deanop
P>S> Absolutely be careful, NO FALLING ALLOWED!
AnonymousAugust 8, 2008 at 5:48 pm
[QUOTE=Cathy C.]Yhank You Jan for responding to my post. I m just so sick of this whole GBS thing. How long have you had GBS and have you had full recuperation?
Cathy C. don’t feel alone.. We all are tired of this.. At least I am… There are many days I’m daydreaming of the old me (just about 10 months ago…. It’ll get better…. I was very active…. On the bright side, I have been able to do most everthing, I did before…. Are you doing any kinds of therapy? Support groups? Medications?
As far as ivig… I don’t think it matters what your husband thinks regarding the ivig treatment.. No offense to your husband, but what does matter, is how you are responding, both mentally and physically..
About feeling alone… I think its tough for “healthy” people to get a grip, on what we are going thru.. Therefore, I think we isolate ourselves. and our old friends maybe change how they act… I can’t say this is totally my situation, but I saw it early on, when I was in a wheelchair/walker etc.. It changes your perspective…
Well, I’ll shut up now… I’ve yakked (spelling) enough…..(English wasn’t my major as you can see)…. deanop
AnonymousAugust 9, 2008 at 11:06 am
Thank you for replying to my post. We don’t know what caused my gbs. On a wed. the fingers on my right hand went numb and by the next wed. I could not stand or walk without much assistance. Thats the day I was admitted to the hosp. and started that night on IVIG. I was on neuro floor for 6 days and then straight to rehab for 3 weeks. In hosp. for 1 mo. I came close to being ventilated but was able to maintain my airway. Thank God.
My daugher is an RN and had me diag. before taking me to the hosp, what a saint.
As for my lifestyle prior to gbs. I am an RN I was going to school to get my BSN, working full time as unit manager in emergency department, very STRESSFULL job!:eek: I had been dieting, lost 40 lbs and was working out at curves, which I loved. So you can see, miss independent, thats me and having to depend on others just makes me crazy.
I have a very wonderful family and support system but this is such a lifestyle change it sucks (sorry) but it does.
Like I said earlier I’m trying to take one day at a time.
AnonymousAugust 9, 2008 at 11:36 am
Cathy, welcome to the family. I can’t tell you much about GBS because I am blessed with its cousin CIDP. I have been reading the posts for the last few years. One thing the struck me was someone saying GBS really means Getting Better Slowly. I know you want your old life back. However, if you push to hard, you can do more harm then good. When I first read you post I did some research on the web. There was one article about recovering form Sensory Neuropathy. I tried to copy the URL but it didn’t work and I ran into some other problems. I just rechecked the thread and realized I had forgotten to post a reply.The URL is [[url]http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1296422][/url]. Do a copy and past to your browser’s address window. I download the article. I’ll try and send it to you in an email. The file is too large to attach to this posting.
AnonymousAugust 9, 2008 at 11:55 am
Cathy-hi from one ER nurse to Another. There are a lot of nurses on this forum. I’m like Jim-I was dx with CIDP the same age as you. Neuro has told me my cidp is mostly sensory. He took me off work immed., but I have read many of the GBS threads and getting better slowly, never give up, rest when you need to, push yourself, but don’t overdo are the general overall themes I have gotten out of them. I currently get 2 days of ivig every 2 weeks, plus Neurontin and Imuran. There is so much to read on this forum and a caregivers thread and wonderful people to ask questions too. But wanted to say welcome to the family. Take good care.
AnonymousAugust 9, 2008 at 2:09 pm
Hi! Thanks for responding to my post. You said there are alot of nurses on this site. Doesn’t it make you wonder sometimes what our immune systems have been exposed to over all those years of nursing? I was a pediatric nurse for 23 yrs. befdore I went to the ER. In ER 10 yr. and of course I am not working now.
I was approved for SS disability pretty quickly. My Long term disability ins. co. took care of filing and I didn’t have to do anything.
I get ivig every 3 weeks, I take lyrica, imuran (full dose), requip, BP meds, zoloft, xanax, percicet, vit. B-12, B complex, Vit E, Calcium, Baby asa, Sometimes I just wonder if I need all of this???????:confused:
Talk to ya soon!
AnonymousAugust 9, 2008 at 2:31 pm
Thanks, great article and it is so true. I can’t function in the dark and I do have to think about every movement I make. I use to be able to type about 80-90 words a min. Now I type with my index fingers only. I’m fairly fast at it, my fingers just won’t work like they use to no matter how much I think about it.
Ahain, Thank You, great article.
AnonymousAugust 9, 2008 at 8:54 pm
I have had gbs nw for two years. Was paralysed all the way to my forehead. now it is sitting at my chin. I am numb but can use my hands. I walk with forearm crutches (90%) and a quad cane(10%). Started back to work and am driving some. Drs are treating me as if this is all i will regain. I dont know what to think. I am doing PT again. THey seem to think I will be able to walk despite the numbness. I cant get anyone to understand the fatigue. I am bipolar so they think it is because i am depressed. I say i am just tired all the time. THe more i do the more tired i get. I am also having trouble with my memory. THey used to blame that on neurotin but i dont take anything but vitamins and my psych meds(very low doses of those) I can sleep up to 1/2 the day and still do not feel refreshed. I really have to push myself to get anything accomplished.
AnonymousAugust 9, 2008 at 9:31 pm
I think it sounds like you are doing to much. I just don’t believe there is anyway I could return to work at this time in my gbs recovery. I am probably the worst to tell you that you are over doing. Because that is my biggest problem & then I am fatigued and start falling & very weak.
So you still use crutches/quad cane to walk & have returned to work. If you don’t mind me asking what do you do? Because just standing for long periods of time wipes me out! Not to mention walking any distance at all.
Yes depression can make you felel fatigued all the time, but it soun ds to me like you have that under control. Do you have much pain with your numbness?
Let me knowe how things are going.
Stay strong and Hang in there!!!!:)
AnonymousAugust 9, 2008 at 11:14 pm
I also would like to say welcome. I looked up Gas City, Indiana because I did not know where it is and apparently we live about 70 miles apart. In addition to welcome, I would like to let you know about a support group run as part of the Neuropathy Association in Indianapolis on the north side, if you were to be interested. It meets almost every third Monday of the month from 6:30 to 8 pm. There is a neurologist that runs it–Dr Frazer. It is really more of an educational session and discussion than what most people think of as a support group. (No one has really talked about emotions!!, which may make the guys glad!) Anyway, it is really informative. People have all kinds of reasons for neuropathy. I am the only GBS/CIDPer, but we all have a lot of the same issues. It is a new group; we have only meet three times. It is open to anyone interested and adult family members are welcome to come as well. The next meetings are August 18 and Sept 15. I hope you might be able to come.
AnonymousAugust 11, 2008 at 10:47 am
I have a few questions about ivig. I currently receive ivig every 3 wks. During the 3rd week before infusion I am very off balance and I fell x3 last week. I am due for my infusion tomorrow. Does this happen to anyone else?
I here alot about plasmaphoresis (sp), Has anyone had this?
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AnonymousJuly 9, 2008 at 9:54 pm
Hello, I have been reading through the threads, and want to share my story and address a question as well.
I was diagnosed with GBS in February 2008. It started with tightness and tingling in my feet and legs on 2/16. The next few days, it felt like I was walking through snow all the time and the inability to lift my legs by 2/18. I went to my family doctor on 2/18, and she sent me for several rounds of bloodwork immediately. The following day 2/19, I could barely walk and used both railings to pull myself up a flight of stairs. The next morning 2/20, the right side of my face was paralyzed. I was back at my family doctor that morning, and she sent me for a CAT Scan that afternoon and a MRI on the 22nd. Again, I was back at the family doctor that day with absolutely no movement in my face and extreme wobbling in my walking. I was officially diagnosed on the 25th when I had my first Neurologist appt. By that time, I could not walk, some loss of movement in my upper body, no movement in my face, and tingling in my hands and feet. I was in the hospital that week, and my body started to heal on its own without any treatments (thank goodness!!!).
My question is: Has anyone else had GBS mostly land in their face? It has been almost 5 months, and I still have residual effects. My neuro insists that it will all come back, but said this is unique. I also have extreme tearing from my eyes, and he thinks Botox may be an option to alleviate this problem. Has anyone heard of this and share some info with me?
Yesterday, was my first day back at work since February 20th and I am excited to regain some “normalcy” in my life again! That is a positive to me. All along, I have said that I am a firm believer in being dealt only the cards you can handle in life and I did nothing to make myself this way. Therefore, I just have to battle it with all my might! Good luck to everyone!
AnonymousJuly 9, 2008 at 11:17 pm
Hi Ih48, Welcome to The Family. Yes tearing is familiar to me, still comes and goes with relapses and over doing it for me. Don’t do Botox, it could cause more problems, why take the chance. The tearing will slow down as you recover. During my paralysis events(5) my face has been involved in 3 of them. One time my eyelids wouldn’t open for 2 days. I also had eye twitching for about 1 month prior to my first paralysis, it turned into tearing about 1 week before the night I went paralyzed. Tightness in the extremeties was also there for me and still occurs with relapses and fatigue.
Keep a positive attitude and it will help your recovery. Residuals might stick around for quite awhile soo don’t get discouraged. Take Care.
AnonymousJuly 10, 2008 at 11:48 am
GBS which mostly hits in your face is called the Miller’s Fischer Variant of GBS. There is a whole forum on this site devoted to it. Miller’s Fischer presents some special problems which normal garden variety GBS (if there is such a thing) doesn’t. Lucky you.
I agree with Angel Second Class, there have been many people on this site who have tried Botox and most of them have had bad results with it. Theproblem is you need more nerve control, not less.
I hope this helps.
AnonymousJuly 10, 2008 at 1:47 pm
Welcome to the forum! Keep reading and you will/should find many answers as unfortunately, we have all been there. So now we try to make the best of everything and support each other. The one thing I would like to impress upon you is to take it easy and get rest, and then get more rest. There is just no way to be like you used to be – or at least with the majority of us. Please ask questions and vent when you need to.
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AnonymousJuly 4, 2008 at 1:36 pm
My husband Tobiasplayer has posted here. I want to say a few words before I post my questions.
“Thank you to all that replied to his message, the encouraging words I know helps him. It breaks my heart to see him feel so helpless and sad. Every time I read his post it brings tears to my eyes and I love my family very much, that I have lost my independence, excitement for life and becoming a burden to him and my kids. That I am not the same person he married. So a huge THANK YOU!!”
At my last appointment, I have no reflexes in my left leg, minimal in my right. I have minimal muscle control in my hips area where I cannot lift my legs in a stepping motion (lift your knee to your chest). I am not a light person, the last couple of days; I have been having trouble getting up from a sitting position using all my strength in my arms to push myself up to standing position. I cannot stand without locking my knees. If I try my knees buckle and I fall. We were watching TV one night, I saw a person walking that has Polio and told my husband that is what I feel like when I am walking, hoping e understands that I have very little control over my legs.
I don’t drink much anymore as I am having bladder issues. I drink maybe 1 cup of coffee if that (b4 I was a coffee junkie), and 1 bottle of water per day. If we have Doctor Appointments I don’t drink at all. We don’t go out like we used to as we don’t have a chair lift, so going out wears us both down physically and emotionally. I have been and still emotionally distraught about this. There are days I want to crawl in a hole and just die, why did this have to happen to me, our lives were going in a really good direction for a change. Then I think to myself, why does this have to happen to anyone. The pain, heartache, the emotional rollercoaster people go through it is not fair. The waiting is the worst…does the most damage to a persons will to live and to get better….the unknown. There should be a law against that.
That is all from me, thanks for listening.
AnonymousJuly 4, 2008 at 2:01 pm
Welcome to our family! Your feelings are completely normal.
I am also going through this roller coaster ride. I have CIDP.
Give Sherry a call. She can help you and get you connected with others.
If you want to chat send me a private message with your phone number.
Again welcome and post your questions so people can help you.
You are lucky to have a wonderful supporting husband and family.:)
My husband and son are also very loving and supprtive!
AnonymousJuly 4, 2008 at 2:55 pm
I went back and read your husbands post and you have had problems for a while without treatment. Your husband was given good advice about you needing to get treatment soon before more damage is done. You should go back and read his thread again on those treatments.
I have GBS and don’t know about the treatments for CIDP or your symptons.
We all know what it is like to be emotionally distraught when we have had such a life changing illness to our body. You need to talk to your Dr. about your feelings so they can help you with it. Many of us are put on medication for depression to help us deal with those feelings.
When you do finally get treatment, your body needs to be well hydrated with water to help you.
Talk to Dr. about your bladder issues also.
It is important for you to tell Dr. about everything.
Write down everything bothering you and any questions you want to ask, take it to Dr. with you.
You have a very supportive husband and family.
I’m so sorry you are going through this and hope you get treatment and diagnosis soon.
My prayers are with you
AnonymousJuly 4, 2008 at 5:52 pm
You and Tobias are in the worst part of this whole GBS thing. You are in a state of limbo or purgatory where everything is suspended because of illness and you are unable to make plans. This is truly the worst of times. But when you are at the bottom, there is only one way to go from there. You will either get better, and most everybody with GBS does get better, or you will learn to live with the situation. Either way, things get better for you.
There are quite a few positive things that you and Tobias mentioned, and that makes me think you have an excellent chance of getting better. You are able to support your own weight. If you can do that, you can use your own body weight to exercise your leg and hip muscles. Some people go a year or two before they reach the point where you are at.
The fact that your doctors have come to some conclusions about your condition makes it so they have a sure course of action for treatment. CIDP is not a very easy thing to diagnose. The GBS/CIDP Foundation still hasn’t developed diagnosis criteria, but they expect to have the work done sometime this year.
I know things look bleak right now, but things can start improving faster than you thought possible.
You and Tobias will be in our hearts and prayers,
AnonymousJuly 5, 2008 at 4:02 am
Welcome to the forum in person! I want most to say life does get better. Second, I would like to say that take advantage of assistance to help get stronger and to gain back a little independence so that you feel that YOU can help in the fight. Since there are strength and balance issues, try using a walker (or even sturdy cane). It will help a lot–especially stability. I have a walker with a seat (rollator) that I got on the internet. It is great to let me sit down when tired and also to carry things from one place to another when I need to do so. Are you getting physical therapy? Try to do so if you can but realize that people with GBS/CIDP have to do PT a little differently in order not to overdo. Another suggestion about the bladder–don’t let that rule your life. Talk to your doctor. There are medicines that may help and there are products to help (Depends being one).
It has seemed to help me a lot to drink a lot especially juice and GatorAde like drinks. Some people are more sensitive to caffeine after GBS.
I join with others that if emotions need some pharmacologic help to focus toward gettting better, that this can often be a huge benefit. Healing has to happen in body, mind, and spirit–all three.
WithHope for a cure of these diseases
AnonymousJuly 5, 2008 at 1:50 pm
I have been using a regular walker; for short distances (bathroom trips, going to bed all in the home) I can take about 5-6 steps at one time and have to rest. I do have a wheelchair (borrowed, 10 years old) for when we do go out. I can’t bend down or over to pick things up. I fall forward, like falling on my head. When I do fall I try to crawl, but my I have very little control over my legs and hips. When I do use the wheelchair my legs seem to get weaker, when I try to get up. I also have been experiencing “muscle twitching in my abdomen now, still happening in my legs. Both of my doctors have not allowed PT at this time and quote “will not support it”.
I stopped driving back in March, I scared myself with my son in the car my choice. So I have to depend on my husband to do everything that involves leaving the house. We do not have a chair lift so for me to “get out” is not possible as I need the help of 2 people for me to try and get up off the stairs. Hubby says, “I’ll put in a slide for you…lol”. The kids make light of the “stair thing” as I have to slide down on my butt. It reminds them and me of when they were little, doing that!
We do not have a date as of yet for any treatment. The Neurologist has not found a cause. He said “if I had a cause we can treat the cause”. I have noticed the last couple of nights when I sleep on my left side my arm and hand goes numb? Has that been happening to anyone? As for the bladder issues, I have talked to my GP about pain. But he keeps telling me that I am “under the care for my Neuro. and to talk to him.” My Neuro. tells me to ask my GP for anything. I am thinking about changing doctors, but it is hard to find one that will take new clients. We will wait and see that the other specialist says.
July 5, 2008 at 3:31 pm
My 11y/o Kevin had all that you do and after the bladder came constipation and then breathing, that is when I went into psycho mode. Our podiatrist of all docs hooked us up with current doc who suspected gbs over the phone and ordered us to er for an l/p and it was confirmed. Have you had ncv/emg and an l/p? If all of those are normal, is it possible for him to write something to the effect of cidp based on clinical presentation and deterioration? Then reccommend ivig and insurance should approve it. Then if there is improvment, the ivig could act as the diagnostic tool. If he is reluctant to do ivig and is SURE it is not GBS, steroids could be an option. Cheap, as this seems to be an issue for some docs, instant results for some, but not without side affects. Weight gain, mood swings and over all weakness for some. It takes a while to get off of them too. But is you cannot get into another doc quickly and he is reluctant to do ivig, this could be an immediate help. If the doc sees it works, maybe he could introduce the ivig then and begin to wean you off the steroids. Has ms, transverse myelitis, cmt, all been r/o? Regarding the arm pain upon waking, you could have just slept funny if it has gone away, sometimes it is easy to fall into the trap of attributing everything to cidp. I do it too, but have gotten better. Kevin woke up the other morning complaining about his arm and right away I assumed cidp, not thinking about what a mad man he was in the pool the day before with his friends. He has been complaining he is tired the last 2 days and since we are on day 35 of a 30 day cycle, I am in panic mode. I too have been very tired , quessy and dizzy, so have some other people we know, so maybe something is going around and I have to after 22 months remember everything is not cidp, so, your arm may just be funny sleeping! Good luck in trying to get your doc to listen. We will pray for you. Once you get a dx and a treatment plan, it just becomes another thing you have to do, I would say we are about 60% at the point where it is no big deal compared to how bad it could have been or how bad others have it, at least cidp has medicine. Not to say I don’t get pissed some days, but I try to think about the good stuff more.
Dawn Kevies mom
AnonymousJuly 5, 2008 at 6:31 pm
I haven’t gone back and read all of the posts, but if you have insurance, you may want to have your physician, whichever one will do it, have you evaluated at home for some equipment to get around better, get up and down, toilet seat, shower bench. etc.
I am also glad that you have posted. There are a lot of really nice folks on this board who have a lot of wisdom and suggestions that have helped me tremendously. Good luck and welcome! Gabrielle
AnonymousJuly 6, 2008 at 11:18 am
We have gone to the local red cross and gotten a transfer bench and the walker. We have had the toilet seat for some time now. I brag to my work buddies that have lifted pick up trucks that my toilet has a 6 inch lift kit installed. As far as the chairlift etc. Insurance has approved to reimburse us, we have to put the money out first. We are currently trying to get by on my income, until her approval for long term is given and we are expecting that any day. It sucks when you live paycheck to paycheck, but then again, we are probably not alone in that.. We will get one, hopefully sooner than later. My main concern atm is for safety reasons, we have a house fire I have already told Micheline she will be dragged down the stairs so fast…lol. The neurologist has talked about the IVIG at our last visit but he wants Dr Gillian Gibson who is apparently a top Dr in the field in BC to look over the files and maybe a consult as well before treatment begins. Maybe then we will see some favorable results. It has been a long hard road as you all know and have experienced. Long road ahead, but in the end, it is what it is and you just deal with it day by day.
AnonymousJuly 7, 2008 at 10:04 am
No word yet. I think this week we are going to start lighting some fires under peoples butts to get the ball rolling a bit faster. Unfortunately they may not see us as much of a priority as we see ourselves. They no doubt have many patients to think about and I only have one, my wife. I do not blame them, this is how the medical ball bounces. The beauty of a socialized health care system is we don’t have to pay for all of this, the fall back is, we wait…I want to put the old saying “The squeaky wheel always gets the grease” to test..heh.
AnonymousJuly 8, 2008 at 8:36 pm
try to get in touch with a [B]patient advocate[/B]. that is what my aunt does, and boy is she good at lighting fires under the right butts! she takes her job very seriously – to save peoples lives by insuring they get proper care. i live in a small town, so i dont think we have one, but you may.
as a nurse, she would intimidate me. she is the one the big dogs walk on egg shells around. she definitely gets things done! she has even tape recorded doctors (the ones who are her coworkers) and then played it back for them to prove how big of jerks they are being. she has brought them to tears, heard them apologize, and watched them change their ways (with their tails between their legs).
i dont know how it works with socialized medicine, but she told me over and over again that the insurance company can be your best friend. Hard to believe, ha? See, when your docs mess up, then your health gets worse, and that costs the insurance company way more money than if the doc would have done what he was supposed to do in the first place.
dont know if ive been of any help, but i sure hope so. remember…you are the boss! the health care team works for you – not the other way around.
AnonymousAugust 4, 2008 at 1:51 pm
From my last consult; he did say it was a form of GBS, but changed his mind to Progressive axonal degenerating peripheral neuropathy. We did discuss the IVIG treatment but that was back on June 19th. He said it was an option. He also said he was sending my file to Dr.Gibson a Neuromuscular neurologist but I haven’t heard from her either. I haven’t been to any rehab, which I think would be the best interest in keeping my strength instead of loosing it
I can walk with a walker but very short distances as my foot drop is getting severe in both feet now. What I have noticed that I can only point 1 toe upwards now, the rest of my toes I can’t and my ankles can’t either. I think the worst part is I still haven’t received any treatment and doesn’t look like it will come in the near future.
Within the last month I have noticed that my ability to lift myself with my arms is getting harder. As well as my feet are getting ice cold. I have to be very careful when I walk or when I get up since my toes curl under.
Does anyone have suggestions on what I can do or use to stop that from happening? I tried to wear socks, but when I put them on my toes curled and stay curled. When I had to use the washroom, the lino on the floor made it impossible for me to secure my feet, they kept slipping out from under me. As for shoes, I am down to 1 pair of sandels so I can get my fingers in to straighten them out. What do I do for the rain or winter time?
This is getting more and more fustrating as time goes on.
AnonymousAugust 4, 2008 at 3:57 pm
Hi Micheline-I read through all your posts and I think it is time to get really squeaky with your current neuro-or light a big bonfire under him> I have cidp but have a lot of similar problems as you. And I agree with the others-call Dr. Gibson every day too for that appointment, but call your current and REDISCUSS your immediate need for a PT home evaluation for, at the very least, evaluate safety and weakness/falling issues. The docs don’t see you in your home and see how you are struggling so much!!!!!!!
I have a couple of small ideas that I also do-I do arm curls and stretches over my head with 3# weights to help strengthen my arms and for now just worry about the current weather and your sandals—try wearing them all the time to keep your toes pointed out straight and keep your feet and ankles secure so you won’t slip or fall. I wear sandals till the snow starts flying and then have a good pair of boots I wear till the snow stops flying.
Also REDISCUSS with that neuro the discussion you had about the ivig or at least try steroids–he should be making that appointment with the other neuro and is legally/ethically/professionally responsible for your care-he accepted you as a patient and he must treat you—-time for you and Steve to light that fire or start squeaking louder till something is done. Everyone is right, you will hopefully get better, and it is a slow process, but good grief get something started NOW!
You and Steve are in my prayers. Take good care of you.
AnonymousAugust 4, 2008 at 5:11 pm
Dr. Scholl has some toe splints you may want to try. I found some gel ones that I use. They aren’t exactly what I need but are better than nothing. I know there are firmer ones, but I haven’t tried them. The gel ones take some of the pressure off and even though the toe still curls, it is not as bad as without it. Worth trying and they aren’t very expensive.
I also wear Dr. Scholl’s shoes or Good Earth Or Earth Spirit (something like that with the name earth in it…can’t remember the exact name but know earth is in the name.) shoes. I hate shoes but have to wear them for my work and these two brands seem to be the best for me. I get mine at Wal-Mart. They are reasonably priced so that if it ends up I can’t wear them, I don’t feel so bad about how much I spent. I was buying very expensive shoes and there were times I couldn’t wear them. My daughter in law got lots of new shoes for free! :p
Some ideas for you.
AnonymousAugust 4, 2008 at 11:00 pm
Ohh dear! You sound just like me back in the 90’s when I first got sick with Systemic Lupus and had developed Neurapathy tearing up my motor nerves. It was a struggle. And very depressing, I even got so depressed that I tried an overdose of pills. I really did not want to live like that anymore. Makes me cry reading this posting because I know how it felt for me.
A strong word of envcouragement! Don’t give up! What ever you do! Don’t give up! I got totally bedrdden and told my husband to buy me some craft stuff. A glue gun and just got ideas in my head! I would watch those craft shows and started resting in bed back then watching TV and doing small crafts with my hands. Easy stuff that was not hard to do. Something a child could do but here I was an adult.
I had gone as far as I could go as far as depression would go. Felt like my world was ending before my eyes. I had my children to worry about too and did not want to see them without a mother.
I know we all have different religions and have our own ways of praying. I am Catholic. Everynight I would pray to God, Jesus and the Virgin Mary. I would envision her in my mind and I would close my eyes and try to calm myself down. I had heard all these miracles about the Virgin Mary and asked her to come into my body and soul and relieve my pain. Trying to relax at the same time using my mind of matter. Strange thing would happen for I could almost feel the presence their and holding my hand.
5 years I prayed every single night. And then some nights I would get angry because my higher power was not listening to me. But I did get some sense of relief feeling that presence. Each day getting sicker and sicker with no doctor helping me out. And then I was getting angry with those doctors and felt like they were stupid and had no knowledge at all about illness! Boy was I angry.
I was so tired of crying to my family and telling them that I was dying. I felt myself dying and knew if something was not getting done soon that I would die. The weakness had taken over and I could barely fight it anymore.
Take my advice for I have been really sick for several years but have improved until a few years ago after a car accident. That brought my Lupus back adding an undiagnosed CIDP also. And yes I am at my second time of being sick. Starting to become a Pro knowing my body and it’s effects.
Use your mind over matter. Take your mind to a beautiful place. Visit a country you have never seen. Anything to take your mind off this nasty disease helps alot.
When we were children we used our imagination and created our own fantasies. When the computer came out, I told my husband I wanted one and we save our money and got one! I alway’s wanted to travel the world and when I got online, I saw Germany, France, Italy, New Zealand. And it took me to another world. I could not use my body so I used my mind.
When I made my first craft, it was ugly and looked like a two year old made it. But it gave me self esteem and a feeling that I still had some use in my body.
I made over 500 of those little pins and gave them as gifts but improved my crafting skills.I donated those pins to Cerebral Palsy and MDA Association for Christmas gifts to those that were worse to me.
The only thing I can do to help you is be your friend. You can private email me and give me your phone number if you wish. I get free nights and weekends on my cell phone.
Keep fighting and don’t give up. And take that mind over matter into account.
I lost a 30000,00 a year job back then, felt worthless and felt like I was no longer a human being. I learned to except my illness back then and I learned to except that I would not be me anymore. No more dancing, no more sports and going out living my life of dreams. But I had to think about all the things I had interest in and used that to help me get better. What I could do back then I would do and what I could not do, I excepted it and kept living.
I am too waiting for treatment again and am handling it the best I can right now.
You hang in there and you fight this off. I will keep you in my prayers. And if you need a friend. I am here! A big cyber hugs just came your way!
AnonymousAugust 5, 2008 at 9:29 pm
I also have bilateral foot drop, feet that get really cold and a neuropathy which really does not like either hot or cold body parts so I HAVE to wear socks. At the worst of this, I had to wear two pairs of socks to stay warm and to provide extra cushioning for sore feet. I have three suggestions.
First and probably the best, is that AFOs (Ankle Foot Orthotics) make a huge difference in walking. They keep the toes from catching on the ground and support the ankle. Search through some of the threads about these and see if you can get some. Best are those made for you, but some people have to advocate hard to get them with doctors/insurance because they are more expensive. The advantages are that they are made to fit your lower leg and foot exactly and so you do not get sores. They can be made to extend enough under the toes to keep them straight.
Second, as I got stronger, I found that shoes with a firm sole help. I went to a family run shoe store that advertised in the Yellow Pages to help fit shoes with AFOs or medical foot problems (I just looked in the Yellow Pages and it was under Shoes-Orthopedic although I remember looking under orthotic???). There I tried on several shoes until I found a pair that it was easier for me to walk in. I also went at a less busy time, so I got attentive advice from people used to helping people with walking challenges. I am not a shoe person, but I like comfortable, conservative shoes. The best kind without AFOs, for me, are New Balance W576. I got them in black so I could wear them to work and they look less like “tennis shoes”. I have a very narrow foot so other cross-trainers might work for others. New Balance is about the only company that makes narrow “athletic” shoes. These have enough sole width to help with the imbalance I have, have a firm sole to help me not trip unless I am tired from trying to walk too far, support my ankles, are light so I don’t get more tired walking when picking my legs up more to compensate for the foot drop, and are warm and comfy as well. I’m a little self-conscious when I wear them to church, but I figure it is better to be able to go to church than what I look like. 😀
Third, at home, have you tried slippers like Isotoner. For me, these have a rubber heel with some strength to help a bit with the tripping and sides to help keep the feet warm. But the tops are flexible enough you probably as well could straighten your toes out through them. An added bonus is that the rubber sole helps to prevent sliding/falling! One of the hard wired habits I have is that I have always taken my shoes off as soon as I get home and ran around in socks. The slippers feel enough like “no shoes” to not drive me batty, but help compensate for the other challenges that now are present.
WithHope for a cure of these diseases.
August 11, 2008 at 3:04 pm
Glad you are seeing the doc, hope all goes well.
AnonymousAugust 23, 2008 at 12:41 pm
Hello, I thought I would give you an update from my appointment On Thursday.
Dr.Gibson is a great doctor, very understanding and straight to the point. She had an intern and 2 med. Students help with my case (the more the better as she stated). She did say she wished she saw me sooner though. But when all was said and done and after her and the other three concluded with my file. She returned to say that it isn’t what they suspected so not GBS-CIDP. She is unsure of a diagnosis at this time but reassured us that we will find out. Apparently, I am a unique case. She had one patient 25 yrs ago with close to my symptoms. With the EMG I don’t have any response from my knee down, and the one with the needles (cannot remember what it is called), I have decreased muscle in my back. And muscle fasting in my thighs.
She did want to admit me on Thursday, but there Neurology center is full. She has faxed my GP to start the IVIG treatment, she said we have nothing to lose and I would notice if it works. I am to start this treatment sometime next week. The good thing is I can get it done in Campbell River. Since she has undetermined diagnose she is referring me to one of her colleague’s for another EMG and muscle biopsy. That is in September and on the same day I will be having another MRI (full spine and body) apparently my other ones were just partial MRI’s and then she will have her own to work with. I am not sure if it will be an out patient, 1 day, or I am admitted for longer. She is getting back to me next week with more details and times.
On a bit of a bad side, my health benefits said that the Neurologist in Victoria has said all my tests are coming back negative. That there isn’t any “objective findings” to pursue my LTD. I told them I had a second opinion and they will wait for that to make a final decision. We discussed this with Dr.Gibson and her exact words were “you are paralyzed, you tell them to fax me the “information request” and I will call them if I have to”! That was a shocker to me, but it was a relief to hear her back me up.
So we had a long day…but I believe she may be “the doctor” for me. She even called me the next morning. That is it for now…I will let you know what the week will bring. Keeping my fingers crossed.
On another note I am having troubles getting off the toilet. A few times I have had to wait for my husband to come home from work to help me up. Any advise for this would be great.
Thank you to everyone here.
AnonymousAugust 23, 2008 at 3:44 pm
I plan on having a very long talk with my doctor this week. I need to be on the IVIG’s myself and this waiting for Duke to call is taking to long. I’ve been in Limbo since June and don’t understand why I am dealing with what I’m dealing with. Hate to hear they still don’t have you diagnosed but glad this doctor is starting treatment for you. I hope they do this for me pretty soon. Getting frustrated myself! But glad the doctor is thinking of you and going to try and get you better. Wishing you my best! Keep us posted!
AnonymousSeptember 16, 2008 at 8:25 am
We have the raised toilet seat and we purchased these bars that attach to the toilet itself rather than the wall. I am on the search for something that would enable her to at least be able to do for herself in the bathroom but don’t know what else to try. As it stands now she has to plan all her bathroom trips around me being home. For the living room we got a lazy boy chair loaned to us that raises you up to almost standing but she (Micheline) is unable to stand with that. Her LTD has finally been approved and next purchase will be a chair lift for the stairs. I am scared to death that if we have a fire I will be hauling her down the stairs by her ankles.
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AnonymousJune 24, 2008 at 9:11 am
Hello. A bit of background first I guess. I am the husband to a person recently diagnosed with CIDP (just last week as a matter of fact). It has been a long six months to get here even. My wife started complaining of loss of strength in her legs last year but really started to worsen in November. By Dec she was walking with a cane, by early Feb of this year she was falling and had to leave work (she was an internal auditor and 90% of her job involved travel).Now she can barely walk with a walker and a wheelchair is her mode of getting around. We had 5 MRI’s since Dec, every blood test known to man, CT scans and a spinal tap. Everything came back negative thus the hard diagnosis. She keeps getting worse by the day. Seems to only be affecting her legs and now has started affecting her bladder. Upper body seems fine. The neurologist is baffled by the lack of evidence to back up his diagnosis, but all the other symptoms are there. No reflexes in knee and ankles etc. He has done all of the electrical tests etc. We were starting to get very frustrated with the lack of diagnosis, but since she had all the symptoms without the the other indicators I guess I cant say as I blame her doctors. The neurologist wants to start my wife on the IVIG but wants us to see a muscular neurologist in Vancouver (we live in Canada on Vancouver Island) before he starts this to make sure he hasn’t over looked anything. She has received no treatment thus far, not even physical therapy to exercise her muscles except what we do on our own. I love my wife dearly and it is just killing me and the kids (she is 37 and the mother of 2 teenagers 16 and 14) to see her like this. She is a strong independent woman and this has almost but destroyed her will. I have been doing as much research as I can on my own, but without a diagnosis I have been basically chasing my tail until now. What kind of questions should I be asking the neurologist? His lack of confidence in his own diagnosis leaves me a bit nervous since he still doesn’t seem 100% positive. We only have a few neurologists available to us here and he is apparently the best there is. I do have a question regarding the IVIG. Is this done as an out patient procedure or does this involve a stay in the hospital over the few days it is done? Anything we can do at home here to help her prepare for it? Any assistance and guidance you people could provide for me would be a huge help. I feel so helpless as I watch her struggle with this. I try to be the house cheerleader and smile whenever I am near her, but I hear her at night and when I am downstairs in my office crying and it is breaking my heart.
Sorry for the long rant and look forward to hopefully seeing the return of my wife to her old self….if that is even going to be possible. But any improvement will be a welcome one.
I may have posted this in the wrong forum, please excuse, it is early and I am still on the first cup of coffee… 🙂
AnonymousJune 24, 2008 at 11:51 am
Hello! I am new here and on the mend from GBS. It started in January. I am 29 with a husband and 2 boys, ages at the time were 6 months and 2.5.
I cried my eyes out every single day, so I can understand how your wife feels. As for me, the crying was so bad, the drs. made me see a psychologist and started me on more anti depressants.
I received IVIg in the hospital and now receive it at home (have been home since April). A nurse comes once a month to administer it. Its A 3 day process. My neuro ordered this.
As for questions for the neuro, I would ask for an EMG. I would also ask about getting her into an outpatient rehab. If she does have GBS/CIDP, she needs the rehab. I hope I helped a little.
AnonymousJune 24, 2008 at 5:09 pm
I am sorry you are having to go through this. It isn’t easy being a caretaker but you need to know the people in our GBS/CIDP community really treasure and admire devoted caretakers, such as yourself.
I wouldn’t be too worried about your doctors lack of confidence in his diagnosis. Neurologists diagnose CIDP by ruling damn near everything else out. Thats not the type of diagnostic procedure you should feel very confident about. His lack of confidence means that he is being [I]real[/I] and [I]honest[/I] with you. That is important. Would you rather have some arrogant Dr. God be 100% sure about the diagnosis and possibly overlook something?
As for your wife, no one knows what she is going to be like one, two, five or ten years from now. There is no crystal ball and a doctor who tells you what the future holds for her is being foolish. I know several people with CIDP who function at very high levels and you wouldn’t know they had anything wrong with them if they didn’t go to the local support group meetings. Lets hope and pray your wife is in that category.
For right now, not knowing much of anything is the worst place to be in. You will adjust to life with CIDP and you will define a new normal for you and your family. Once you develop the new normal, things will begin getting better.
AnonymousJune 24, 2008 at 7:05 pm
Welcome to both of you. Hugs from all of us here.
I agree very much with Lee about your doctor and the fact that he is being honest with you. CIDP is a quite rare disease with lots of variability between patients. It is often a diagnosis of exclusion. I have had huge frustration with the fact that my doctor still has not really said with any confidence whatsoever what I have. I am like your wife with lots of negative tests and a number of symptoms supportive of GBS/CIDP. It is hard to know and plan life without knowing what the diagnosis is, but on the other hand, I think his list of possibilities includes some nasty stuff that I might as soon not want to know if I had it. 😉 I got better with large doses of IV IgG. I got better with rest. He also wanted me to get a second opinion, which I did three weeks ago. I am waiting to hear about that.
My suggestions to the both of you are to utilize this website for education and to get the information mailed out by the GBS/CIDP foundation, to try to rest as much as possible and be patient (these are not fast resolving diseases), support each other and talk about what it is like and what might help, and finally, don’t be afraid to push for treatment if it is going to take a long time before she can be seen for a second opinion–especially if there are major steps downward. Even though it would not seem so, there is a point where I found myself unable to cope. It was not because there was a big difference as things slid slowly downhill, but it was a straw that broke the camels back type situation–where finally, it was too much to keep going.
In retrospect, it may not have been a bad thing because it forced me to complain and my neurologist to define what he needed to have happen before he might feel less uncertain with the diagnosis–so action got made.
Anyway, both of you keep up hope.
WithHope for cure of these diseases
June 24, 2008 at 7:38 pm
Sorry to hear about your wife. My 11 y/o has cidp. We had a few ups and downs regarding a dx. Once we got to the right doc. things changed. As mentioned an honest doc willing to listen and admit he is searching is the best thing you could ask for. That means he cares enough to get to the bottom of things.
I assume your wife had a spinal, that would be a reliable diagnostic tool, but as other tests, it too does not always come back positive.
Once we met up with our current doc, we had another bit of confusion. We had a dx of gbs that turned out to be cidp. In the meantime, because they start out presenting the same, it made it very difficult to separate the two. The best plan we utilized was after a fair amount of time and a resurgence of symptoms, we did ivig again.
I would say ivig SOON is what your wife needs. The first time would probably be in a hospital setting to make sure she has no reactions to it. Usally the first time, a loading dose, is 2g/kg over 5 days. A slow flo rate is important. it helps with reaction and is safer in general, long term too, regarding kidneys. The hospital would premedicate her with basics like tylenol and benadryl and follow up every 4-6 hours for the duration. After her first treatment, she could get it at home if you like or at an out patient facility. Sometimes it depends on different insurances. We do it at home through a home health agency called Coram who we love. They stay the whole time. kevin’s time is 6 hours/40 min. over 4 days. Being at home makes things comfortable and relaxed. If you do decide to do it at home, I could give you info on how to get on lists to make sure you always get ivig. Good luck!!!
AnonymousJune 26, 2008 at 10:37 am
Thanks for the replies. To answer a question posted to me above, yes we had the spinal tap and that came back negative as well. We went for a blood test in the city we live in yesterday as ordered by the neurologist, but that was a loss due to the fact the hospital here didn’t know how to perform them. They did get the info finally and we are trying again after the weekend. The things I find hard to swallow is the time in between. The visit to the muscular neurologist will take a few months in the meanwhile my wife worsens. She can barely go to the bathroom by herself now. Time must be of the essence and the longer we wait for this appointment or that one, I am afraid it is doing unrepairable damage. God help them if I ever hear “if we could have dealt with this sooner”…I will lose it. Anyways, again, thanks for the words of encouragement and I am sure she will start posting here soon with her own questions as well. With the internet it has made the world a smaller place and easy to be able to research and get support as found here. I can’t imagine what it was like before….
AnonymousJune 26, 2008 at 4:15 pm
Welcome to our family. I was a caregiver to my husband Frank from Dec 2000 to Dec 2005 when he passed away from a heart attack. being a caregiver can be very stressful, so my first words of advice is to make sure you take care of yourself. I didn’t, I thought I could do it all by taking care of my husband and having a full time job. I had a mini meltdown. Now as far as your wife is concerned, she needs physical and occupational therapy so her muscles don’t atrophy. The Drs can give her pain killers or many here take Neurontin, Lyrica, Cymbalta, it seems to work on making the patient’s life more bearable by squashing the nerve pain. This is a very painful syndrome because the myelin sheath that covers the nerves is eaten away, leaving raw nerves that react to touch or just about anything. In the beginning of my husband’s illness he couldn’t have a sheet touch his legs or feet, he would yell in pain, if anyone bumped into his bed he would yell in pain and he use to have a high tolerance for any kind of pain. His pain thresehold became extremely low. He use to choke on his food and any beverage he was drinking. These are just some of the things that happen to GBS/CIDP patients. This is a slow process back to what one was before the illness struck them down. I had to bathe him, dress him and feed him for a long time.
If there are any questions as a caregiver that you would like to ask me, I will try my best to give you an answer.[/B]
AnonymousJune 27, 2008 at 9:28 pm
[COLOR=black]First, let me say that I am sorry your wife is suffering so.[/COLOR]
[COLOR=black]I have CIDP. With aggressive treatment, I am able to live a normal-ish life. I work more than full time, continue to volunteer at my church, and do most everything I really want to do. No, I can’t climb Mt. Everest, but then, I couldn’t before CIDP. Most people with CIDP do reasonably well, although I will not kid you that your lives have not changed.[/COLOR]
[COLOR=black]There is a school of thought that one way to diagnose CIDP is to treat the symptoms as if they were CIDP. If things improve, then CIDP is likely. Following that thought, encourage your current doctor to prescribe IVIg. While not without risk, at this point your wife has little to lose and much to gain. You really cannot wait for months to see another doctor before starting treatment: some sort of treatment must be started soon.[/COLOR]
[COLOR=black]I can tell you that seeing myself deteriorate is devastating. However, even a little improvement can lift my spirits like nothing else. This is yet another reason to get your wife treatment now.[/COLOR]
[COLOR=black]Godspeed in getting treatment sooner rather than later.[/COLOR]
AnonymousJune 27, 2008 at 9:55 pm
Hello Tobias and welcome to the family.
I would hope that the Doctor would start IVIG in lieu of a diagnosis anyways to try and stop any damage that is occurring to the myelin coating of the nerves, and maybe the nerves themselves. You mention electrical tests, did they do a nerve conduction velocity test (NCV)?
Usually IVIG can be done in the home (at least here in the States). However they usually do the initial dose or doses either outpatient at the hospital or during the initial hospital stay. They want to make sure that the IVIG is tolerated well. Usually Tylenol and Benedryl are the only pre-meds I take before my infusions. Some people require other pre-meds, but that probably wont be known until the first infusion. Also there are different brands of IVIG, some of us need a specific brand that we tolerate best.
Good luck with everything, press for the IVIG and if your Dr. hesitates, ask him if your wifes nerves and nerve coating are being damaged while you wait for the other appointment.
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June 1, 2008 at 5:49 pm
Hi to all from a first time poster to any online site – so am still getting the hang of how this all works.
I have been reading the forum over the past few weeks – no sites available in Australia and no support group in my state.
It has been great and humbling to read your stories and gain some valuable information and to reinforce how lucky I have been, so a big thank you to all. Although everyone seems to have different symptoms it is very frustrating not to be able to talk to anyone else who understands what you are going through but it is wonderful to be able to relate to many of your stories and I now realized that some of my other issues (back ache, fuzzy head, memory loss etc) may relate to my GBS not just part of “getting older” as I had put it down to.
I am a 50 yo female from a country town in South Australia who was diagnosed with GBS in May 2006. I was admitted to hospital after first noticing weakness in my legs which spread quickly to near total loss of all movement in 5 days – was lucky enough not to have my breathing effected due partly to already using a CPAP machine at night time. I had a lumber puncture and a nerve test to confirm the diagnosis and then a four day cycle of IVIG which improved my condition from the first treatment. After spending a fortnight in ICU I was moved to a rehab center for a further fortnight and then back home to continue my progress. During the next 12 months I continued to improve back to about 90% wellness and am left with upper leg weakness making getting out of chairs/toilet and stairs difficult and my balance a bit out of whack as well as fatigue being a major issue.
Until a month ago all was going ok until I started getting pins and needles/tingling and burning in my feet which then started to spread up my legs and arms (not symptoms that I had had with my original diagnosis). Went back to my Neuro who said I was having a relapse and put me on a 3 week course of prednisolone which has certainly made a difference but has not total cleared the symptoms. Spoke to my Neuro about having a second course but he said that I couldn’t do that for another 6 months.
I know stress seems to play a major part in my wellness but its not always easy to keep this under control. I am lucky to have a very supportive family and I am trying to get lots of rest. I have found going to Curves a huge benefit to my movement and agility.
Not sure what to do from here on in so here is some of my questions that I would be grateful for any feedback on.
From some of the positing I gather some of you guys seem to have been taken the prednisolone for a while as well as others having top ups of the IVIG..is that correct? Is anyone finding that as the years go by the fatigue/any of their symptoms get worse? Has anyone found a successful way of dealing with the fatigue? Is there anyone in Australia that has had ongoing treatment?
Once again thank you for having a great site and for providing an excellent resource.
AnonymousJune 1, 2008 at 9:28 pm
There are a few of us from downunder here – Kazza, Kiwichick, me (and I am sure there are a few others) – as long as you are happy to talk to us Kiwis!!!! 😉
This forum is outstanding in terms of the support and advice you will find. The thing is, each person is different – BUT there are striking similarities in terms of the emotional and physical issues that we all deal with on an ongoing basis. I hope that you will take advantage of all the weight of wisdom that exists here!
Take care and welcome !!
AnonymousJune 2, 2008 at 6:41 am
I am another Aussie – living in QLD but originally from Melbourne. I got GBS in July 06 so roughly the same time as you. I spent 4 weeks in ICU (i was completely paralysed and ventilated) another 10 days on the ward then 10 days back at my local hospital for rehab (we are in a country town with no ICU so spent 5 weeks an hour from home and my 3 little kids)
I was lucky to have a pretty quick recovery and was back at work in less tahn 6 months. Apart from upper leg weakness like you mention that make things like getting uot out of chairs, walking up stairs etc a little difficult, I have no real residuals. Have even come to terms with the fatigue and nana naps have become a fact of life!
I am sorry to hear of your possible relapse … Hope everything is going well. Are they thinking maybe CIDP – just that prednisone is normally not used for GBS but is for CIDP. Some people also have regular doses of IVIG for CIDP. I think with GBS that even without treatment, the progression will eventually run its course. IVIG just halts the progress and allows recovery of nerves to begin sooner. I know my doctors consulted other neuros after my first course of IVIG (5 days) as i was still paralysed and in a coma but were told there is no evidence that a second course of IVIG is of any benefit.
Maybe it is just a flare up of your residuals and with a bit of rest thing might settle down a bit … fingers crossed.
I just came across someone else from another website (a parenting website) who is also from SA. She had it in November 03. It would be great if there were some Australian forums … no offence to non-Aussies but we can be a peculiar bunch (kiwis even more so lol)
AnonymousJune 3, 2008 at 5:51 pm
Welcome to your new family. There are many of us here that have been around quite a while as you see its been 11 years for me. Age does play a big part I believe in what residuals do to us. This forum has been a God Send to me and I know many others. Please visit us often even if only for social purposes – we all need to keep in touch.
I am curious if your Curves is similar to my Tan & Tone – the robotic machines??? I have started using them a month or so ago and love them. I plan on being there in about a half hour. Getting off work at 5:00 p.m. – somehow I manage to keep a 40 hour week job even though I tend to miss work a couple of days a month. About half way the exercises, I can feel those good natural drugs in my body kicking in and I smile. BUT, do be careful as anything can be overdone and you won’t know until it is too late.
Looking forward to hearing more from you!
June 3, 2008 at 10:07 pm
Thanks for your responses..I am happy to talk with anybody!! It is nice not to feel so isolated.
Curves is a 30 minute workout on hydraulic machines. I just plod along doing what I can manage usually 3 times a week and have made some improvement over time.
I am really confused about ongoing treatment so will keep reading thru old posts for further info.
Good to meet you all
AnonymousJune 5, 2008 at 6:03 pm
I am also from Country South Australia. I live on Hindmarsh Island down at the mouth of the Murray! Sorry to hear that you had GBS it is a nasty thing. I will send you a personal email and maybe we can make contact that way as we both live in the same state.
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AnonymousMay 28, 2008 at 2:57 am
My Dad was diagnosed with GB on April 10th 2008 after being sick with the Camplyobacter bacteria he got in Morocco. He went to the ER when he got home and was told he had the flu. After a few days of not feeling better he went to his regular doctor and found he had the bacteria. At this point it was gastrointestinal only. He got an antibiotic and the next day started having aches and pains in his ankles and was having trouble with his hands. By the end of the evening we were calling the doctor at home because he could hardly move his hands. The doctor sent him to the ER and was going to call an infectious disease doctor at Oregon Health Sciences University. By the time I arrived at their house to help take him to the ER, he was throwing up and on the ground in a heap. I called an ambulance and my Mom and I followed him to our local hospital. By the time he got there, maybe 2 miles from his home, all of his pain moved up his legs and settled in his back. He was in so much pain that he could hardly speak. They thought he was just dehydrated from the bug and this was causing muscle cramping. For some reason when he was lying there howling about his back pain, I had a flashback of my Aunt 14 years ago. She had GB. I didn’t say anything to my Mom but just kept hearing my Aunt saying the same thing. In a short time my Mom said she thought he had GB. I just looked at her and said me too. She also remembered my Aunt’s situation. I called my sister to let her know what was happening with Dad and she called me back to tell me about the Camplyobacter. She said that a rare side effect was GB. I told her what my Mom and I where saying and she agreed with us. My Aunt is not my Dad’s sister. She is my Mom’s sister and got her GB after having surgery. We did not mention our suspicion to the doctor because he was still waiting to hear from the infectious disease doctor. I think they where thinking West Nile Virus at first. That is what I overheard anyway. One of the EMTs came over and said that he was researching the bacteria and that it can cause arthritis like symptoms in some cases. He was surprised to hear us say that it can cause GB. I don’t think he knew what GB was. Really, how many of us would until you experience it first hand? My Dad could not give them a urine sample after 2 full bags of IV. His bladder muscles stopped working at this point but wasn’t figured out until later in the early morning. They decided to keep him for the night and his doctor would see him in the morning. At this point, he could not move his legs or his arms up to his elbows. We showed up early in the morning thinking that his doctor would be there first thing. Wouldn’t you want to know what mystery disease your patient had? Well, at this point he lost more control in his arms and could not lift them at all. The nurse was so upset because the doctor had not been in to see him before going to his office. It was 10:00 am and Dad decided that if his doctor wasn’t there by then that he was going to ask to transfer to Salem Hospital. We asked his nurse what he would do and he said to hang on a minute. I think he walked across the street to the doctor’s office and forced him to come and see Dad. Of course, he wasn’t ignoring him. He said he thought Dad had GB and I was relieved because we allready knew it and thought he was not going to get it right. We now know that it is life threatening and that he was very close to needing a respirator. If I had to do it again, I would not worry about offending the doctor’s ego and just tell him what we found on the internet. You know how they feel when people self diagnose. Sometimes they get mad and won’t even listen to what you have to say. Needless to say, he was sent to Portland to the medical school and was in ICU for 4 days and hospital for about 10. He was in pain the entire time and it just got worse at night. It was all in his back and nothing would touch it. He was up for 4 days in a row. He was transferred to a skilled nursing facility and was still in pain and would be up almost all night until about 2 weeks ago. His doctor finally got him a pain patch and he has been sleeping almost every night since. Did anyone else notice the pain intensified at night? He is still in the nursing facility and can only move his left thumb and fingers very little. The right has not caught up yet. His legs seem to have improved a little. He can wiggle himself a little but cannot lift his legs or bare weight at all. He is just waiting to got to rehab. It is such a slow process and is hard to comprehend that it will get better. Since he left the ICU our family has taken turns staying with him 24 hours a day. He cannot do anything for himself and when he was up all night, we would try to rub his back and help him rest. He bought us a futon and we stay at the nursing facility still. He doesn’t want to be left alone. I think depression is rearing it’s ugly head. He has good and bad days and breaks down sometimes. He is normally a very active person and is a contractor and is always the person everyone goes to when they need help. It is hard for him to have to turn the tables and ask for help with everything.
It is nice to have a site like this so we can compare notes on the recovery. I don’t tell him the time frames. There is no real answer as to when it will make a noticeable change so why get his hopes up.
This story was a little long but I felt like it needed to be told.
AnonymousMay 28, 2008 at 5:02 am
Wow- that’s quite a story Elizabeth! I am so sorry your dad is in so much pain, I hope they are able to give him something so he can sleep now. I have to say you all are a wonderful family to spend so much time with your Dad. I can understand the depression, I think some of it for me was panic too. I’d just nearly lost my life to creeping paralysis and it was terrifying that it might happen again at anytime so I never wanted to be left alone either in case I suddenly stopped breathing or something else equally dire. It took me a long time to deal with the PTSD mostly because I didn’t recognize it for what it was at first. Once I stopped being scared I would stop breathing then I had to deal with the huge lifestyle change – both of us did… this is not a disease that just affects the person sick – everyone in the family is involved and affected and both my husband and I had to make some lifestyle and attitude changes. It takes awhile to find your “new you”, first you have to let go and mourn your “old you” and then each day is a discovery of what you can and can’t do and striving to do what you can’t do. It’s a journey and a process and can’t be rushed because I’m impatient to be normal again. I feel for your Dad and it warms my heart that you all are being so kind to him in his illness, you’d be surprised at how many families can’t deal with it and vanish.
AnonymousMay 28, 2008 at 8:50 pm
Welcome Elizabeth and father to this family of people who are living with Guillain Barre or its longer cousin CIDP. It is great that you are so supportive of your Dad. Keep reminding him how much he has done for others and how special he is to all of you. As he gains strength back, let him do what he can, but save the tough things for “sharing” so that he keeps gaining strength. I also think that the worse things of all this was the fear of being alone and having the life I have lived change so drastically overnight. It is almost expected to get a little depressed in mourning for the life that is so changed. Your family is helping him a lot to be with him.
WithHope for cure of these diseases
AnonymousMay 28, 2008 at 11:05 pm
Hi Elizabeth, Welcome to The Family. Your Dad needs to be on neurontin or lyrica for pain all day 24/7. The pain needs to be controlled at all times. Narcotics don’t work as well as neurontin or lyrica do on nerve pain. He can be given up to 5600mg in a 24 hr period. 300mg 3times a day is a good place to start, if that doesn’t take care of the pain than raise it by 100mg or higher until the level of pain is controlled.
You didn’t say whether your Dad had ivig or pp or no treatment to this point. What treatment has he been given?
Your support of Him is Great! Keep a positive attitude and environment around your Dad and his recovery will come along. Take care.
AnonymousMay 30, 2008 at 2:02 am
Thanks for the advice on the meds. I failed to mention that he is on neurontin and between this and the narcotic patch, the pain is now under control. He had 5 days of the IVIG and no PP. They felt like the IVIG did it’s part and used PP as a second option. My aunt had the PP and seemed to recover quickly afterwards. Again, she did not have it as severe. I just got back from seeing him tonight. My mother, brother and I were able to transfer him to his car today and take him out of the facility for a car ride. We took him to his home town and he got to see some neighbors. He did great and was so emotional when we took him back. He really broke down. We are going to try to get him out as much as possible now that he knows he can do it.
AnonymousMay 30, 2008 at 8:27 am
I can relate to what your father is going through right now. It sounds almost exactly like what I went through close to 22 years ago. I was given nothing for pain for fear it would interfere with my breathing. After 4 to 5 days of pure torture from the lack of sleep and pain that racked my entire body I finally went into respiratory arrest and was intubated. I was then finally given something that allowed me to sleep for a short period of time. I believe the drug was called Atavan. Back then PP and IVIG was not given and they informed me that all they could do was let the GB run its course. When I got off the ventilator after 2 months I remember receiving Motrin and Darvaset for pain which was very little help.
Thankfully there are better ways of treating GBS now and it appears that your father is receiving the benefit of them. I commend you and your family for staying with your father. This is the time that he really needs you all.
AnonymousMay 31, 2008 at 4:37 am
Hai Friend Welcome To The Family And God Bless Ur Father……take Care Of Him And Let Him Know What This Diescease Is. Tell Him The Facts Dont Hide ..make Him Strong… This Is What God Gives Us Which We Should Bear…all The Happiness And Sadness…this Is Part Of Our Life……did U Take Him To The Physio Therapist…that Is Necessary After The Treatment…..u Can Read My Threads For Further Information I Had…byeeeeeeeee….take Care..
AnonymousJune 1, 2008 at 10:26 pm
It’s nice to meet you and I am sorry to hear about your father. You came to the right place as we understand and are here to support you all any way that we can. Usually the IVIG is tried first because it is considered less invasive. They hold off on Plasmapheresis until they are sure the IVIG is not working, as the PP will remove the IVIG.
Neurontin/Gabapentin and Lyrica/Pregablin are usually used for the nerve pain, my personal experience was I prefer Lyrica over Neurontin because it had less of a seditive effect on me and it required me to take alot less pills. Each of us are very different and for some neither of those work and there are several other drugs that are used instead.
Another thing that may help is an anti-depressant, because many of us required anti-depressant’s while in the hospital, and for me I am still on them almost 5 years later. Losing your independence, being in the hospital, etc etc can cause severe depression and/or PTSD.
Please remember each of us is different and our cases and severity vary greatly. I hope by giving you this information it will help you to ask the right questions of your Doctors. If I can do anything else please don’t hesitate to ask, we are all here to help.
AnonymousJune 10, 2008 at 1:05 am
Thanks for the warm responses. This is probably the hardest thing I have every gone through in my life and I don’t even have the disease. I wish my Dad could use his hands and be able to communicate with all of you. It would probably make him feel better. He has been a little crabby and seems angry this past week. Can’t blame him one bit. He thought his recovery would be faster. When we changed the calendar to June he sobbed. My Mom is trying to get him an appt soon to be evaluated. He has not seen a doctor since he went to skilled nursing on April 24th. I just wonder if there is anything they can try to help speed this along. Every case is so different. I got the information from this website and we have all read about this disease. It was so informative. We have shared the info with my Dad and it eases his mind to know that some of the things he is experiencing are normal. I haven’t told him the part about the recovery possibly taking a few years. I don’t know if he could handle it right now. What do you all think?
AnonymousJune 10, 2008 at 8:46 am
I don’t know how other people think, only how I think. Why keep the truth from him? I never have liked having people hold information from me. I would rather be told just exactly how it is so I can get on with dealing with it.
Your father will have a lot of ups and downs before he gets back to any type of a normal life and I do not think it will ever be like it was before. I know that it was not for me and I had to except it whether I liked it or not. Just stick with him through it all.
I do hope that he is receiving as much physical therapy as he can handle without over doing it.
AnonymousJune 12, 2008 at 10:22 am
I agree with Ghostbear on this…You don’t have to be brutal with your words to him, but let him know that this could take a while to recover.
As much as I hated to admit it, if I pushed myself I felt worse. GBS requires rest, LOTS OF REST. The more rest the better. Physical therapy is very important, but recovery is important as well.
I remember people telling me different things about rehab- I would or wouldn’t do this. It gave me motivation to do what I could to get better.
I’ll admit Elizabeth, I was a bit more educated than most when I was in recovery, as I had it before. However, I was able to share with a couple of others in the hospital with GBS/CIDP about the recovery time.
Stay positive, and communicate with him as best you can. The best thing my family did for me was communicate (spelling board at times).
Hang in there, and be safe.
AnonymousJune 22, 2008 at 4:15 pm
GBS has a “healing time” of it’s own. However, the fact that your dad has the ability to help himself into a car, visit people and go places in such a short time is very positive…plus he did not require a tracheotomy and ventilator. So, in reality, your father is 4-6 months ahead of many other patients. Your father needs to have faith, keep a positive attitude, high spirits, and he already has family support. A positive attitude with spiritual and family love, heals, protects, and restores health more than anything else on this Earth.
Some vitamin supplements I would recommend are: Fishoil 1500mg/day (omega-3 for the myelin sheath); vitamin B-12 (Methylcobalamin lozenge type) 2000mcg/day; vitamin B Complex. B vitamins for the cells/nerves.
AnonymousAugust 2, 2008 at 1:55 am
Since I last logged on there have been many changes. My Dad was feeling really down in the skilled nursing facility and wanted to come home. His physical therapist agreed that he could recover better at home. He had my Mom buy a van with a ramp and order everything he needed to be set up at home. His mood improved about 200%. He got great care but needed a change of scenery. He has an electric wheelchair ordered that he can control with his head. His is still not able to walk or stand but his legs are getting a lot stronger. He can lift the footrests on the wheelchair and scoot himself quite a bit on smooth ground. His hands have done almost nothing since this all happened. He had his catheter removed recently and was glad to see those muscles are working again. Mom has to help him with all of his bathroom needs. She is glad he is home too. It is more work for everyone but is easier to get things done around the house. His insurance will not pay for him to go to rehab and stay in patient because he chose to come home from skilled nursing. They will pay for 30 days of out patient though. He has only had 8 sessions in one month because they can’t get him in. Next week he will finally have a regular schedule and I am sure he will show a huge improvement. They are trying to appeal the insurance companies decision to see if they will pay for 2 weeks of in patient. He will more than likely need more than 30 days of out patient also. They may just go and pay themselves and sue the insurance company later. He has to go to therapy to recover. The van has given him so much mobility. He can get out of the house and go for a ride when he is getting stir crazy. It is easier for taking him to therapy also. He doesn’t have to be transferred to and from his wheelchair. We put him in his recliner the other night and he was in heaven. He is dreaming about putting a safety harness over the treadmill so he can do his own therapy. I hope he isn’t serious. We live in a small town and it is great to take him for a walk so he can see all of his friends and get caught up. His mental healing is coming along.
AnonymousAugust 2, 2008 at 5:43 am
Hi Elizabeth! Welcome to the family here! I am also a new comer and the site is so nice and wonderful. Very useful and helpful and very caring. So sorry to hear about your father. I wish him well and do hope his recovery becomes a speedy one! Thank-you for sharing your story. So many of us have our own story!
AnonymousAugust 2, 2008 at 9:54 am
Elizabeth, I too came home to recover. I had done about 6 weeks in rehab but just couldn’t stand it there. My doctor finally agreed that I would do better at home with my family. It was extra work for everyone but in the end, it was worth it. Take care and glad to see your dad is happier. That will help alot in his recovery. Keep us posted.
AnonymousAugust 2, 2008 at 10:34 pm
Elizabeth, That is Wonderful news that your Dad is home!! It is much better for him both mentally and physically to be out of the nursing home. Wow, what kind of ins only allows for 30 days of rehab for this type of an illness and for someone who has all the disabilities that your Dad obviously has. That just isn’t right!!! Rehab pt/ot is very important, I would get after the dr, get the paperwork done for unlimited pt at least. I know what its like to deal with only 30 days of pt-my Dad was allowed only 40 days, but we were able to get him into another rehab program for a few months just by having the dr fill out the needed forms in advanced, he had a major heart attack in march. After we got him home and going thru the pt and rehab, he is doing very well.
Keep his positive attitude going!!! Take care.
AnonymousAugust 3, 2008 at 12:44 pm
Elizabeth-welcome to our family. We are here to support you anytime, please rememebr that……I can almost see your dad’s smile sitting in his recliner. I feel being at home is the best therapy; true, it is harder for your mom and family, and I will join in with the others and commend you for sticking it out with your dad. I take the Neurontin 5600 mg. a day and it does help a lot, although am considering the Lyrica. Like Jerimy said, what works for one doesn’t work for another. Somehow in advocating to the insurance co., point out the cost savings to them in home therapy versus hospital therapy. And reinforce the little achievements as positive as you can. I think your dad probably knows by now that this is going to be a slow recovery, but answer him honestly if he asks you questions. And remember he needs rest. And your mom needs some R & R away from your dad-a day at the beauty parlor and lunch or something she would like. A movie or anything she can do with her friends and you or someone can spend time with your dad. There is a caregiver thread here too if you haven’t seen it that would help too. Take good care of each other. I will add you in my prayers to bless your dad and bless his caregivers. Keep us posted.
AnonymousAugust 4, 2008 at 6:11 pm
Hello i know what your father is ging thru and you guys are helping him a lot by being there for him. I have had gbs for two years. i didnt have ivg or pp.by the time they figured out what it was it was too late. I amstill numb fron the chin down but am able to walk and drive. I have recently gone bck to work. just be there for him and let him exxpress himself. there are still days when i cry to be “normal” I see a (mental ) therapist every other week. it helps a lot. Somebody who doesnt see me everyday that i can vent to without burdening my family. You might want to look for a local support group that you can meet face to face with. Amy
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AnonymousApril 24, 2008 at 10:56 am
Hello everyone, my name is Rachael and my boyfriend was diagnosed with CIDP in October of 2005 at the age of 27. It’s been a crazy road so I am pretty excited to find this forum where I can finally meet other people who really understand what those of us in the GBS/CIDP community live with. Mike was admitted to the hospital in 2005 with numbness in his arms and legs and high blood pressure (is this something anyone else has had, he still has some high blood pressure even now). Mike went through IVIG (had to discontinue due to an allergic reaction), and finally Plasma Exchange. After 2+ months in our local hospital in Indiana he was discharged. About two months later he was readmitted to Indiana University Hospital with extreme swelling and pain in his feet. Is there anyone else who has seen/had this happen in conjunction with CIDP? He was diagnosed with Erythromylalgia caused by the polyneuropathy. His neurologist dosen’t even know of anyone else to have this happen so I’m just curious if this is something new or not.
It’s been a rough few years but Mike has finally hit 1 and a half years without another hospital admission! He still has pain from the Erythromylalgia and the numbness/balance issues but it’s better then where he was.
Do any of you have any tips on ways to keep him encouraged. He gets discouraged that he can’t feel his legs and can’t do all the athletics he used to. It’s pretty frustrating for a 29 year old guy to walk with a cane.
I’m so excited to find this group and finally talk to others who understand this. We’re even more excited for the Symposium since it’s pretty close to where we are in Indiana.
Thanks everyone for listening!
AnonymousApril 24, 2008 at 11:28 am
😎 HI RACHAEL, I TOO WHEN FIRST ADMITTED TO THE HOSPITAL PRESENTED WITH NUMBNESS IN BOTH THE ARMS AND LEGS AND EXTREMELY HIGH BLOOD PRESSURE AND STILL HAVE ELEVATED BLOOD PRESSURE ALTHOUGH ITS EASILY CONTROLLED WITH MEDS. THE SWELLING BIT COMES AND GOES AND IS USUALLY ASSOCIATED WITH SIMPLY ” OVER DOING IT ” WHEN YOU NOTICE THE SWELLING JUST TAKE THINGS A LITTLE EASIER FOR A FEW DAYS AND IT WILL SUBSIDE. ITS ALSO A GOOD IDEA TO KEEP IN MIND WHAT ACTIVITY CAUSED THE SWELLING TO BEGIN WITH AND JUST CUT BACK ON THAT A LITTLE.
AnonymousApril 24, 2008 at 5:46 pm
Welcome to the group!
Yes swelling in the feet and legs can be linked to CIDP Chronic [U][B]Inflammatory[/B][/U] Demylating Polyneuropathy.
I also have high blood pressure and am on meds.
Mike is lucky to have you in his life to be there to support him!:)
He must listen to his body and try not to over do things, he will get tired faster than before and has to rest more.
Rhonda from Canada
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AnonymousFebruary 8, 2008 at 2:12 pm
In April of 2007 I was out walking one day and I noticed that I was limping. I did not give it much thought as I thought I was just out of shape and needed to get out and walk more. As time went on the limp seemed to get worse. My daughter noticed me limping and asked me why and I said I did’nt know. This continued on through spring and summer. One day in June of 2007 I went to the ER and told them my symptoms. They did a CT scan on me and said they could find nothing wrong. I was wondering if I had had a stroke or if I had MS. All these thoughts were going through my mind. My son and his dad said that I was making it up. Everytime I walk somewhere with my son I had to stop and rest. My left leg would feel like it was going to give out on me. By the time I got back home I felt exausted and like I was going to fall plus I was sweating profusely. Finally I made an appointment with a GP. She referred me for neurological testing including an EMG/NVC. The neurologist said there is evidence of a possible polyneuropathy or a radiculpathy. I have nubness in my right foot and weakness in my right foot and leg. Sometimes when I talk It seems harder then it used to be. Next week I go back to the neuro again. Does anyone know if the weakness could possibly ever go away. I now walk with a cane and on some days it seems like I struggle with that. Thank you for reading my post.:(
AnonymousFebruary 8, 2008 at 2:49 pm
With the proper treatment it is very possible for your numbness/weakness to gradually fade away, but it will take time. Depending on your dx I think there is a good chance that your nero. will probably start a loading and then maint. dosage of IVIG, and if that doesn’t work there are many other alternatives. I was dx with CIPD last sept. and at my worst point was paralyzed from the neck down but between the meds and some very good physical therapists I went back to work just before x-mas and except for some relatively minor residuals am back to almost 100%. One of the biggest things you have to watch for is to not overdue it….rest when your body says to rest even if it means you do nothing but sleep some days.
AnonymousFebruary 9, 2008 at 2:33 pm
i was dx with cidp nov 2007, my symptoms were numb, electric shocks, tingling, pin pricks, burning, itch, and pain on both sides of my body. This is from my toes to my knees and from my fingers to my elbows. I, also, have no reflexs.
MD started me on monthly ivig, prednisone 80 mg a day, cellcept 2000mg a day.
So far i’ve not had any real resolution of my symptoms. have had some better, but few better days, but no where close to being back to normal.
i hope they will start you on treatment soon and pray it works for you
you have joined a terrific group. Welcom
AnonymousFebruary 10, 2008 at 1:47 am
Hi Spring, Welcome to The Family! You need to insist on some answers or treatment, especially if they think it is a neuropathy. Like others have mentioned start with ivig. Request a lumbar puncture to see if there is a high protein count, although 5% of gbs cases have normal levels and are still dx with gbs. Listen to Your body and feelings. Keep a daily journal of your symptoms, pain levels etc, this may help your dr.
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AnonymousJanuary 25, 2008 at 11:05 pm
Hi all, I was diagnosed with GBS/Miller Fisher variant on June 11, 2007. I’ve had chronic sinusitis since 2005, two sinus surgeries, lots of antibiotics and prednesone to try and fix my sinuses. The latter part of May 07 I started with a funny sensation in my hands. I’m a secretary and was having trouble typing. At the time I was on two strong antibiotics and thought I was having a reaction to the meds. As the days went by the headaches came, then trouble with eye movement and vision. I went to eye doc and he said I needed an MRI. I had an MRI it only showed infection in my sinuses. Then my left eye lid shut. I called my doc and he said go to the emergency room, they will run tests and get to the bottom of what’s wrong. I was admitted, tests and tests, a diagnosis of GBS/Miller Fisher variant, they tried the IVIG first and I continued to get worse, trouble swallowing, trouble speaking, trouble moving, they did plasmapheresis, still got worse, was transferred to another hospital for second opinion and confirmed first diagnosis, had to have a feeding tube, then transferred to another hospital for rehab. Luckily I did not have to be put on a ventilator. Finally got out of Hospital Aug. 9, 2007, with in home therapy, then outpatient therapy. Developed blood clots Oct. 1 2007 another week in hospital and setback in rehab. I’ve been told it could take up to two years to recover. I’m 7 months out and I still have the tingling or humming and pulsing in my hands and feet, trouble walking & sitting for any length of time. I tire easily, my range of motion seems to be getting worse, my body feels tight. My neurologist says it’s only been 7 months and the increased tingling could mean my nerve ending are waking up. I’ve read some of the postings and I’m not sure but it looks like some people get IVIG again? My doc did say NO to steroids, “Studies show quicker improvement but also reoccurence”. People say I’ve made great improvement. Yeah I know, I’m walking, talking and since Oct 10, 2007, eating, yippee, the feeding tube is gone. BUT I feel bad all over, I hurt almost everywhere. I’m looking for some hope.
AnonymousJanuary 25, 2008 at 11:43 pm
Hello and welcome!
I’m sorry to hear of your tough struggle these past 7 months! You have come to the right place for support. It sounds as if the people around you want to be encouraging by pointing out how far you’ve come (that’s normal) but they can’t feel what you feel. As I tell my family, from the neck up I’m the same old me but from the neck down, I don’t know who’s body this is. I just ask them to bear with me as I try to learn to live with this new and changing body. I’m glad to hear the feeding tube is gone, one less worry for you.
As I understand it, steroid therapy is not indicated for GBS. And yes, people get more than one round of IVIG. I have not had this therapy yet but many others on this forum have and they will weigh in on this topic…give them a day or so. I’m only 7 weeks out from my diagnosis and still learning as I go.
I just wanted to say Hang in There! You’re not alone and there IS hope!
AnonymousJanuary 26, 2008 at 1:08 am
Welcome! Keep asking the questions and reading the past posts. No one can tell you how long your recovery will be or what that really means. You will only find out as you go along. Yes, there is HOPE! You will find it thru the great family members we have here. Nerve healing takes the longest time of any part in the body. Be good to you and don’t get over-tired! That always seems to put us back a few paces. Glad to have you aboard 🙂
AnonymousJanuary 26, 2008 at 7:52 am
Definitely no sterroids if you have GBS. IVIg will not help now if your body is not under attack. Ususally IVIg is given when first diagnosed and then two weeks later, if no improvement is seen a suggested second round is given – however giving more a few months down the road has not, according to studies, had any advantages (IVIg is given on a regular basis for CIDP). Also, there is no 2 year time limit, remember that (no doc should say something like that), as GBS’ers see improvement a number of years on.
(Sorry about the quick post, rushing off somewhere and just wanted to get my thougths down 🙂 )
AnonymousJanuary 26, 2008 at 9:01 am
hi smiley & welcome,
many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 26, 2008 at 4:18 pm
Hi, Thanks for the encouraging replies. Even though I have family support, It’s great to not feel so alone and that there are people out there who know what I’m going through. My thoughts have been, I gotta exercise, I gotta try to get back to my old routine, work, cook, clean. But fatigue grabs me so fast. Reading the posts tells me I’ve got to learn to rest before I can get better.
AnonymousJanuary 26, 2008 at 5:16 pm
Hello Smiley and Welcome to our family. We are here for support when you need and to help guide you when you ask questions. Your story sounds very similar to mine but I did go on the vent and I did not have blood clots but I had a lung that collapsed and pneumonia. Each story is very similar but also very different! They gave me IVIG and at the end of that treatment they did not feel it was working so they gave me the PP. That did stop the attack. Now it has just been all recovery. You willl get frustrated and maybe depressed on how much times it takes to recover. Just be patient and also remind yourself that GBS also stands for Getting Better Slowly. As far as the rehab continue to do what they showed you. Work on your breathing and staminia. Range of Motion to keep you flexible until the tendons, ligaments and muscles all recover as the nerves start to get the signals to the correct areas. Even slow signals can make exercise an effort and when the nerves messages are leaking thru the sheath into the muscles causing that vibration or humming sensation you will get tired easier. Fatigure is the big complain from everyone here. Learn to listen to your body. Do exercises for short periods so you don’t wear yourself out. Maybe during commercials or for 5 minutes each hour will give you a good routine during the day to work all the different areas. Remember balance is accomplished by stronger muscles to you might have a funny gait to your walk or the distance might not be where yo want it. Increase it slowly that way you don’t have a relapse where the residuals will flare up and set you back. Lifting a bottle of water and increasing the amount of the water is safe. Only increase that weight slowly. You will know when your body is ready to work harder. The brain is what gets us in trouble it remembers how we were before GBS. I had the MFv too and I still see the Neuro Optomogist regulary. My periphal vision is still getting better after 26 months. I still have the fatigue but it is getting less and less now. Be patient! Ask people around you to be patient. It is easy for them to see you looking normal and realize that you can not shop as long as you used to or work as hard as you used to. Keep the communications open they will fill in where you need help. Yoga is a good exercise for the person with GBS because it is slow and you hold the positions for as long as you want. Aerobics are down the road. Walking and keeping active is hard but it does increase the longer you recover. Big hug to you Smiley. You have the right attitude to beat this. Remember the nerves to the hands and the feet are the longest and therefore the last to heal. Keep a Journal that will help you look back now and not just see a week to week improvement but the slower month to month and year to year improvements.
AnonymousJanuary 27, 2008 at 2:19 am
Hi Smiley, Welcome to The Family! Never give up Hope! Stay positive. Your body will dictate to you how fast you will recover, nothing else in the world will change that, no matter how hard you want to push it. If you push yourself too hard too fast too early, your only putting yourself at risk of having a relapse or residual excerbation. Take it easy and go with the flow. Take care.
AnonymousJanuary 27, 2008 at 12:26 pm
Welcome to the forum, Smiley. You have got some good advice – all the above. I had a very similar experience to yours, but with a few twists and turns, as you can see we all do. Just follow the above advice. Go Slowly. Pace yourself. Listen to your body. You can only go as fast as your body heals! Pushing yourself causes pain and damage. When I came home from the hospital in 1993 my hubby called me smiley all the time – because that is something I could no longer do. Is your face frozen too? I am 3 1/2 years post gbs, now and still struggle, but the majority of those afflicted make amazing recovery’s, according to the text books. I have never actually met a person with GBS in person. Good luck.Stay in touch.;)
GBS-MFv-1993 and 2004
AnonymousJanuary 27, 2008 at 3:30 pm
Thank you for the replies. I have noticed that although we all are struggling with the same ailment we all have differences. But similar enough to know what I am feeling and going through. The “smiley” nickname is from my childhood. My best friend’s dad called me that. I must smile alot w/o thinking about it bc thru the years others have called me that. And although it’s tough to smile about things now, I find if I don’t, I’d be crying 🙂 The right side of my face was affected, but it’s finally let up enough that it’s not too obvious. I’m affected on both sides but my left side is the weakest, from my neck to my toes. My eye movement and Peripheral vision have come back 100% says the neuo. But I’ve had to up the cheaters. I’m gonna ask him about the med gene suggested and make like a turtle and go slow and steady from now on. I was thinking that therapy had me doing exercises 1 hr each day at the hosp. and 2x a week at home and outpatient. So I was trying to get thru the regiment of exercises every day. Seems I’ve set myself back trying to do this. I was in the rehab hospital at the same time a doctor was doing rehab for GBS. Since then, he’s had an article in the Baltimore Magazine “When Doctors Get Sick”. I called his office and chatted a few minutes, he is already back to work. He said he tires easily though. I aked what he did to recover so quickly so I could do the same. He said, “I don’t know why I got GBS and I don’t know why it left”. I thank you all for your input, its great not to feel alone.
AnonymousJanuary 27, 2008 at 9:52 pm
Remember when you start anything you have to start over especially an exercise routine. Don’t give up on it. Work on facial exercises during a commercial or two. Just a few times to start, first you don’t want your face to hurt and that is really all it takes to make those muscles move. You benefit none by over doing it! Just warming up and cooling down is hard work and considered part of your exercise routine so take it easy and slow. Your stamina will come back, but you have to give it a chance! If you move that arm or leg an inch or a foot that muscle is working…that is all there is to exercise. Keep moving….don’t do jerky or popping movements that could cause injury…..slow and steady movements will help you see where your range of motion is and where your strenght is. No clean and jerk type lifts! They are not necessary in rehab type exercise. No long repetitions are necessary either. We are not out to beat a record. Remember what you did in rehab and work on the movements you were not good at doing and work to get that range of movement back and strenght….again slowly. Most important listen to your body! Is says STOP you stop right then…you can do one more the next week to get your level up to your goal. I never add a bunch of reps or sets in one day I do that gradually over a month or months. No rush! When walking my neighborhood I walked to the next property but maybe not to their driveway….maybe just to the property line. Remember you have to only walk half way….because you have turn around to walk home again!
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AnonymousAugust 21, 2007 at 2:00 am
Hello, Everyone I am new to this forum actually this is my first time on a discussion board ever. Please be patient with the newbie. I have been
reading this forum for several weeks now and am so impressed with knowledge and compassion. I attempt to be as brief as possible to relay the facts and get your advice.
My story began in mid April 2007. I was on my annaul spring wildflower hunt with my best friend. I noticed i had extreme fatigue and my arms and legs were as if they carried 100 pound bags of sand. I also felt light headed and felt burning and tingles and nunbness in my hands and feet. On Saturday I did not feel like shopping(so unlike me) and I could not hop out of the car with my usual reckless abandon at the sight of every bluebonnet. Sunday morning felt really strange but not scary strange. We went on our way and all of a sudden while riding in the car my whole body starts buzzing and stange sensations are going up and down from head to toe. The town has no hospital and I am trying not to panic. Call 911 ambulance ride to the nearest town. The ER does a CT normal, blood work normal, they tell me I had a panic attack give some xanax, send me on my way, to followeup with my Dr at home. Go on about the trip. My friend notices my walking is different and how bad I look.
Get home completely exhausted. Rest for a few days. Go to lunch with my sister-in-law and fall off a curb and cannot get up. Asked for help getting up and back to a different ER. They do a head to lumbar 2.5 hour contrasting MRI and complete bloodwork. Think it is MS. All tests normal. Release me recommend seeing a neuro. I do three days later. Does a full neuro exam inc Ncv and emg. A variety of blood tests to rule out other things. He mentions GBS and recommends spinal tap. He tells me NCV/emg only down 20% and spinal protein slightly elevated and since my symptoms presented more head to toe. Descending instead of ascending he could not conclude GBS. I get one whopper of a spinal headache and am deteroirating
fast. We think it is the spinal headache. I become dehydrated and another trip to the same ER who saw me a week ago. I am trying to get across to the doctors something is wrong. Conclusion give her IV fluids and follow up with Dr. See neuro next day he schedules a blood patch with pain mgmt dr.
Improve greatly, feel better no headache. Still arm and leg tingle issues. See neuro, he schedules 3 day IV Steroid pulse. Improve for 2 days. Then everything goes down hill. At least 2-3 weeks go by my condition worsens to the point my arms and legs are paralyzed. My husband is putting me on the medical potty by my bed, feeding me, watching me. I think i am dying. We try to call Dr. to no avail. We do not k now what to do. Wait a couple of days til follow up appt. I am in a wheelchair hardly able to move, stinky, and 25 pound lighter and he asks why we did not call sooner. He does exam and recommends asap IVIG. We do not have insurance husband is self-employed and we have been turned down bc of my retinal detachments in the past. We whip out the credit card and max it out with 5 days of IVIG, At $3200.00 a bag we are freaking out. I am getting home infused, great nurse and company. June 2-4 have infusion become violently ill. Dry heaves, fever, body aches. Nurse recommends changing to more diluted form. Works like a charm. Start improving greatly. Home physical therapist comes in to start exercises. Keep doing well. Slowly walking baby steps, eating and trying togo potty myself. Mind you i am still bed-ridden by no means retruning to normal. I am still in pain mentioned at every dr visit. He finally prescibes Neurotin and Elavl. Thank goodness.
Still improving baby steps up until July4 start feeling weak and tired. Arms and legs going noodle like. Feeling bad and good off and on Do not know what to think. The neuro orders 3 day IVIG July16-18. We still cannot get him to make a confirmed diagnosis. He tells that there are many neuropathies and they are treated all the same with IVIG. By now I have been reseraching and reading this site and have recieved the info from GBS/CIPD and ordered books. Doing well after 3day enough that PT discharges me I can do the exercises on my own. Starting on Aug 17 going down hill again. Trouble walking, getting up from chair, extreme cramping, tingles, burning in hand and feet and many other symptoms mentioned by ya’ll. Today saw the neuro and ordered an IVIG boost. I get it tomorrow. He still will not commit to a diagnosis. He recommends IVIG boosts for the next 6 mths and to do another NCV/EMG in November. I really do not have too much faith in him. Any Doctor suggestions…we live north of Dallas TX. He was referred by the ER and my family Dr. I think he is 33 yrs old and just does not have the experience.
I have found so much info from this forum. It is terrible that Ifeel like I am trying to diagnose myself. Many weeks ago I was convinced it was GBS because I seem to fit the list. Now I am at a loss.
Any ideas?? I also have a 22 year old son who last summer was diagnosed with IgA nephropathy and only has 50% kidney function. He started Cytoxan and steroid treatment last October to supress his immune system to halt progression/damage to kidneys. We are paying cash for his treatments as well as mine. He was turned down for SSI/Medicaid…he was not sick enough…go figure. We make too much money for me to get any help.
So there in a very large nutshell is my story. Please, please I apologize for the length of this thread. Thank-you from the bottom of my heart for any input.
AnonymousAugust 21, 2007 at 2:59 am
Bluebonnet, Welcome to the Family. Sorry you are having soo many problems. It sounds like you might need to get more rest, in a lying position. I know how you are feeling, relapsing like you are could be 2 different things. 1 being relapsing/remitting gbs and the other would be relapsing/remitting cidp. steroids isn’t recommended for gbs, was the results after your first ivig/steroids different then with out steroids ivig? which one was a better result? steroids are used in cidp cases sometimes with good results. if you have not recovered to a high degree in between the relapses, you more then likely have cidp. It can take alot of trial and error to get it in remission with ivig, steroids and or other meds. Have you tried pp? if ivig didn’t work well for you then you might try pp, if pp doesn’t work well alone, then use ivig afterwards. Sometimes the combination of the 2 works well. its different for everyone. Stay positive, it may take time to recover but be assured you will. Feel free to ask as many questions as you have, or just vent, we understand how you are feeling.
AnonymousAugust 21, 2007 at 7:24 am
You certainly have had a bumpy, or should I say, hilly ride the past few months. I quite understand your confusion, it did seem like GBS initially, which from the sound of things, the IVIg helped, but then the whole cycle seems to start all over again.
If you look in your GBS/CIDP newsletter “The Communicator”, you will notice a yellow insert in the middle. There are some liaisons listed in the Texas area, if you look to see which one is nearest you, they may be able to help you out with the name of a neurologist.
(Cheryl – I have been reading that to have both PP and IVIg will not have any greater benefit than having just one ……. but …… I may not have the correct info 😮 🙂 )
AnonymousAugust 21, 2007 at 10:13 am
hi blue & welcome,
to me i think your neuro is excellent. doing all the right stuff. i wish i had your neuro when i was sick. ‘He tells that there are many neuropathies and they are treated all the same with IVIG.’ CORRECT! make sure any exercise you do is recovered from in 12 to 18 hours or it is too much. i agree it sure seems like cidp & you are getting the correct Rx, scheduled ivig. for the future avoid steroids unless ivig or pp does not work.
much paperwork agrees w you, but there are cases where pp followed by ivig helped where each done singularly did not help. we must remember to always do the pp 1st. if done 2nd, it washes out the ivig.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 21, 2007 at 11:02 am
First off I would like to welcome you to the forum, post often & ask as many questions as you need to; there is a wealth of experience here from people who have or have had GBS & CIDP. I am a person who had a very severe case of CIDP, but was refractory to the standard treatments. I read your post a couple of times & do feel like it sounds like CIDP. Your onset was too slow for it to be GBS, & you seem to fit the pattern of relapsing remitting CIDP. When you are given monthly IVIG does it bring you back to almost normal, if you were on a steady monthly schedule? If so, it probably is CIDP.
As far as treatments, IVIG seems to be the best, but solumedrol is now recommended as the first choice of treatment for CIDP at the University of Minnesota, probably because of the much lower cost. But it only worked two days for you? From my experience Plaspheresis usually doesn’t work as well as IVIG for CIDP & is just as expensive a treatment. Also, I was one who had both in the same day every Friday for 12 weeks, & it did nothing for me. I wish there was something I could recommend for you for the cost of IVIG, as I know how pricy it has gotten, but maybe there are others who could help you out there. But it does sound like what you need is monthly IVIG, even one infusion per month. What is your present condition?
AnonymousAugust 21, 2007 at 2:08 pm
I just wanted to say welcome to your new family where we understand because we feel what you feel. If you give it enough time, there might be another member who is near the Dallas area. We do have members from Texas. It took about six months after a diagnosis of a neuropathy for it to be confirmed that I had CIDP. Give a positive diagnosis time, it does sound like you have a good neurologist. One of my falls was like yours, stepping down a curb. My poor scared mother had to run into a store to get help. Many of us can understand what the treatments are going to cost you when you don’t have insurance. Have you tried to see if you would qualify for needymeds.com? Low cost medical help and you could also call the companies that make the medications you need, like the IVIG’s. Your infusion nurse could tell you what brand you are getting. Sometimes the pharmacy company will give you a break in price.
We’re here whenever you need us. We laugh together, cry together and what we need many times, we can vent our frustrations.
AnonymousAugust 22, 2007 at 11:23 pm
Thank you for the info.
Cheryl, I did not respond well to steroid treatment, so I am sticking with IVIG.
I have not tried pp. Probably see how well the 6 month IVIG works out.
Alison, I found the yellow insert and will be contacting the liason. I think she does not live to far from my brother’s house.
Gene, thanks for the positive spin concerning the neuro. I will also keep in mind the recovery time when exercising.
Pam, I am starting once a month IVIG. Steroids did not work well. My husband worked in Minneapolis for the postal service in their IT department. He was acontractor. I visited several times…only when it is warm.
Liz, Oh I scared my sister in law when fell off the curb too. I am realizing there is the need to call upon patience when dealing with either problem to get a confirmed dx.
Update: Started monthly IVIG treatment yesterday. This will be done for the next six mths. Infusion company is giving me a price break.
Today dressed myself without help.
Legs are wobbly, but made it to the dentist without incidence. He also did not charge me today. I think I may get a cane just for stabilty when the legs get tired.
Took a nice happy nappy afterwards. I will see my dr in a week.
We will just wait and see what happens.
Thank you for your time to respond to my message. It really helped lift my spirits. I have been really down this past week.
AnonymousAugust 23, 2007 at 8:25 am
Hi there! It’s nice to see a fellow Texan on the forums! We can’t be to far from each other, as I live just north of Fort Worth. I’m with Gene, I feel like your Neuro is doing all the right things. Of course other opinions never hurt! There are several good Neuro Docs at Medical City Dallas. Once again………..Welcome!!!:D
AnonymousAugust 23, 2007 at 8:43 pm
Hi…thanks for the reply. We live in Allen…north of Dallas.
My neuro seems to be ok based on his treament plan. I guess I was looking for one who seemed more confident in a diagnosis.
My son sees an orthopedic oncologist and Medical City, I was thinking about looking at the neuro there. Do you know of any by name? Do you see a dr in Ft. Worth? I think just I would like to get a second opinion, if just to make me feel more at ease.
Did the viral meningitis bring about you GBS 2006. How did you respond to pp?
AnonymousAugust 23, 2007 at 9:21 pm
TX Mike Yuan, MD. Neurology & Pain Management Bellaire Clinic, 9110 Bellaire
Boulevard, Suite H, Houston, TX 77036, Phone: 713-490-1493
4703 Brookview Drive, Sugar Land, TX 77479-3073
Dallas: one of the world’s most renounded GBS Immunologists, Richard Wasserman, M.D. Fax: 972-566-8837
Dr. Pinky Tiwari. her office is in St Luke’s Medical Towers. She has privileges at the hospital.
John D. Rossi 920 Medical Plaza Dr. Suite 470 The Woodlands [north houston, near bush int’l airport], TX 77380
Houston’s Medical Center named Dr. Steven B. Inbody. He is a board certified neurologist who specializes in CIDP.
his website at: [url]www.neurologybulletin.com[/url]
Abilene – Dr. Paul Harris. He is the only one I found that has any knowledge/experience with GBS in Abilene.
suburban hospital (West Houston Hospital, Dr. Gaer NOT recommended) by someone here.
take care. be well.
gene gbs 8-99
in numbers there is strength
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AnonymousAugust 20, 2007 at 12:42 pm
Hi there, I am new to this forum and so happy I’ve found it! My mom Nancy, is living with CIDP and has been for the last 6 years. My mom doesn’t have access to the internet right now but hopefully soon. I really want her to read all the helpful and hopeful information.
I live in Toledo, Ohio and she is in Lima, Ohio about an hour away. Her doctors are primarily in the Toledo area. She has been getting plasma treatments and they seem to be helping, somewhat. She gets her strength back and then she has another “episode”. 🙁 This time it is affecting her left side (face and hand). Right now she is getting physical therapy and is staying at a local nursing home. We are all hoping that she will be able to come home soon. My dad is a super support for her but I know it’s not easy for him.
Do you know of any support groups in the Lima/Toledo area for them?
Thank you so much and take care,
AnonymousAugust 21, 2007 at 3:28 am
Hi Alyse, Welcome To The Family. Feel free to ask any questions or vent when you need to. I’m in Sylvania, and my brother works down there in Lima(paramedic). Feel free to pm or email me. Highlight my user name and click on private message or email, and the rest is easy. Where does she get her pp at? Give Her my Best and a Big Hug! Take care. ps. I sent you a pm-just click on your private messages up in the righthand corner.
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AnonymousAugust 9, 2007 at 12:39 pm
Hope you dont mind, I just copied your post from General questions:
Hi all. I have been a longtime reader of this forum but new member. What a great network! I will make this brief. Ha! My process started 3 years ago. Sudden weakness, numbness in feet- mild GBS diagnosed after success with IVIG and NCV’s and MRI. Three months after “cured” floppy feet, pain, numbness– well you know all the symptoms! CIDP diagnosed. IVIG q month ever since. Fast forward to March 2007. Symptoms start again even with IVIG q month. IVIG started q 2 weeks 30 gms ever since. Lyrica upped to 150 mgs three times a day. Since the beginning, what I have that is different from most of you is pain in all my teeth, controlled with Lyrica, dental xrays are normal. No sinus problems. I have had times when the pain was too much to bear! I also have abnormally strong knee reflexes as found by neuro ( apt yesterday) which is normally found with CNS lesions. I have great faith in my neuro, he is well respected in the field. Yesterday, he said- well I am not helping you– I am going to send you to Emory U. to see the Peripheral nerve docs there. This takes a doc to doc call to get in. So I am waiting for him to call back. I will continue on the IVIG and Lyrica for now. My legs are very weak and wobally and I get incapacitating burning, tingling pain in my feet. What do you all think about my differences? Oh yes I have severe hearing loss in only one ear too.
Thanks in advance for your support and ideas
AnonymousAugust 9, 2007 at 9:38 pm
What uncommon symptoms. Your dental x-rays are normal – does that include the jawbone too? The reason I ask is that in the absence of one specific t-cell, jawbone destruction occurs. This same t-cell is common in inflammoratory neuropathies.
I do not want to send you down the wrong path, just a thought that crossed my mind as I read your comments.
I hope you find answers soon.
Here’s a link to the article:
by the way, it is delightful to hear of such a kind and caring physician
AnonymousAugust 9, 2007 at 10:52 pm
Yes, my neuro is very compassionate and actually LISTENS!! My jaw bone appears to be okay. However, we may look again depending on the new doc.
Who knows? Hyperreflexia in the knees and weak ankles don’t mix. My knees actually FEEL weak. Oh, I also get– numb/cold sensations in my thighs that just happens and then goes away. Probably never lasts more than say 30 min at a time. Never happen in both legs at the same time. We’ll be at the store and I will mention to my husband (who has been my blessing through all this) that “My thigh is numb” and just keep on goin’. Who knows where all this will lead. I have never really cancelled out the notion that this is MS. Three years ago, my MRI was negative for disease. I would like to have another one actually and I kinda think I will. Through all this I have kind of kept a sick sense of humor about it. I laugh at myself and wonder- “How hard can it be to walk a dadgum straight line?” Nowadays, it is not so funny and I have grown weary. Not to mention I am worried. I kinda keep that to myself.
Thanks for listening
AnonymousAugust 9, 2007 at 10:58 pm
Sinuses have been clear. It is just my top teeth and it is an intermittent pain that is relieved by Lyrica! and Neurontin before that. The pain lets me know when I have missed or am late with a dose! My neuro could’nt figure it out either. He just looked at me like I had 3 heads!- He and I are very good terms I might add. He doesn’t think it is related to CIDP either.
August 9, 2007 at 11:07 pm
I have no idea if this is pertinent.
I do remember Jerimy on the site copying something for a member Sue with cidp. The post was regarding hearing loss. Jerimy found an autoimmune disease related to hearing loss. Maybe you can search under posts by Jerimy or Sue. Or just PM Jerimy, he will be happy to help you, he is a very nice guy. I have bothered him more than a few times myself.
My next bit of info may or may not be linked to your problem, but I thought it sounded much like what my father in law goes through. He first, like you, went to the dentist for teeth xrays, explaining the unbearable pain. Right away, based on the normal set of dental xrays, the dentist refered him to a neuro. and suggested trigeminal neuralgia. Google it and see if it fits your description. If it possibly does and you would like more info, pm me and I will contact you. I take care of my father in law when he gets his flare ups. After about five years, we have learned to finally spot a flare up before it actually attacks and now we are able to start oral morphine at home as opposed to a hospital stay. Like gbs patients, he gets shocks on the side of his face and teeth, the pain is so excruciating, he cannot drink or eat and therefore gets dehydrated. By this time there is nothing in his stomach and he cannot handle oral pain meds and the attack just intensifies necessitating a 7-10 day hospital stay. Once the pain is leveled off, he can start drinking and eating and we go home until the next flare up. Between episodes, he is on high doses of lyrica and vicodin as needed to take the edge off. It seems (to me) that his flare ups are irritated by barometric pressure changes. We can count on pain in Spring and Winter. Sorry to have gone on, but if I can offer some info to help you, it would make me feel so good knowing that I could spare you the pain Grandpa Bob goes through. Good luck!
Dawn Kevies mom 😮
AnonymousAugust 9, 2007 at 11:14 pm
I had a couple of comments. First, I too have CIDP and have some weird upper teeth pain that no one can figure out. Dentist is baffled and Neuro is too. All I know is that I have very sensitive upper teeth now and neurontin helps. Second, I was recently reading up on Charot Marie Tooth disease and there was mention of hearing loss involved in this condition and some of the other things you mentioned. It is similar to CIDP and Dawn , Kevies mom, on this forum just posted to me about information she has on this condition. Look at my post called Getting AFO’s. Just a thought for the drawing board when considering diagnosises. Take care.
AnonymousAugust 10, 2007 at 9:01 am
The teeth thing is really peculiar isn’t it– but if you think about it–peripheral nerves are there too. Otolaryngologist- THE ear man in ATL thinks the hearing loss is related to the CIDP. However, he was not very familiar with the disorder and I left his office with a big question mark over my head! However, there is peripheral nerve damage potential in the inner ear too. I work with a gal who has CMT and her son has it also. True is looks like CIDP andhas been one of the diagnoses I would like to R/O. My neuro is familiar with CMT (my friend goes to the same neuro) but I guess with my symptoms he has not considered it. I have pretty petite feet and no signs of deformity (yet?) I applaud you all for your vigilant efforts to identify S/S and continued learning about this disease as well as other PN issues.
Gotta go get my IVIG——-
AnonymousAugust 10, 2007 at 4:40 pm
Hi Charliegirl I had hearing loss since I was a child in my left ear. But I notice the last 5 years it was fluctuating a bit. In 2004 when I got CIDP I had my yearly ear checkup and 1 month later went back. When I got a copy of my hearing test recently I noticed that it had dropped 15 db in one month. In Nov 2005 that hearing test showed a an improvement in some areas of my left ear of 25 db. Well about 1 month a go both ears started ringing loudly and in my right ear in one area it dropped 65 db and other areas 20-25 db. In my left ear in some areas it dropped 15-30 db.
I am now on 50mg of prednisone for it and go back to see my ENT DR on Monday for a follow up because I will run out of pills.
My ENT DR was on holidays at the same I had to go to Ottawa for my first ever 5 days of IVIG treatment. So I went to the ER and the ER DR sent me to see another ENT and she said that to her it may be an autoimmune hearing loss.
Patient seems to have a sudden sensorineural hearing loss
So I am not sure if it my CIDP but all year I have had a problem with tendinitis that won’t go away and I feel maybe that I have sensorineural hearing loss associated with Psoriatic Arthritis. I have other signs of Psoriatic Arthritis also but not enough for my Rheumatologist. But I also wonder about autoimmune ear disease or Ostosclerosis as I had a stapledectomy twice in my left ear about 18 years ago. But this does not change the fact in the space of 1 month hearing in both ears dropped a lot especially my right ear where I am severe now and profound on my left.
here is the link that with the article Jerimy posted
and my posts on prednisone
AnonymousAugust 12, 2007 at 2:42 pm
welcome to the forums and to our family. Take a look at the links they gave you that I had posted previously. If I can ever be of any help feel free to email me [B]jerimyschilz at hotmail dot com[/B] and I am always happy to help or you can always PM me here also. Take care and nice to meet you.
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AnonymousJune 13, 2007 at 6:07 pm
Welcome to the forum! Often people dont read some of the categories, but if you go to the “Main Forum” or “GBS Adult” more people will see your post. Were you also aware that the UK has a forum board, even though some post both here and there. The address is is [URL)www.gbs.org.uk[/URL] and click on forums.
How are you doing healthwise now?:)
AnonymousJune 14, 2007 at 4:36 pm
Thanks for your advice. I have been to UK forum quickly and will post on main forum soon. Cant at the moment. Have made, I think, a good recovery so far considering how ill I was not so long ago. Am still unable to see properly and my back aches like you cant imagine but other than that I can live with the other bits and pieces. Will come back with a fuller account when I have more time.
All the best.
AnonymousJune 15, 2007 at 6:42 am
Hi … not from the UK but from Australia. I have visited the UK site but find I get a lot more from the US site (no offence to anyone ont he UK site) Maybe it has something to do with number of members, i dont know.
I had GBS/MF in July last year. Cant believe i am coming up to my anniversary. Was talking to my partner about the darkest days when they really didnt know what the prognosis would be and he said we could still be in the hospital now. It seems so long ago. I definitely feel blessed to be where I am today.
My eyesight came good overnight – i was sitting in the car and realised the double vision was gone. What a relief! That was the last thing to come back for me and was really the sign that i was back to normal for me. Since then it has just been a matter of getting back to life pre-GBS and the fatigue has been steadily improving.
Good luck with your continued recovery!
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AnonymousMay 21, 2007 at 8:14 pm
Hi my name is Tracy and I am 28 years old. I was diagnosed with GBS 3 weeks ago. I had 5 days of IVIG and was in the hospital for 8 days. I had tingling in my hands, and from my waist down to my feet. I am now home getting pt and ot 5 days a week. I still have the tingling sensations but I am walking with a walker. Going from an active lifestyle to not being able to walk and feel your hands is extremely frustrating. I do cry and get upset from time to time when my legs dont want to work, but I am very determined to get back to work by july. i am very lucky to have a loving husband and my brother in law who is staying with us to help me with my exercises. I just want to know when these tingles will go away and when i will walk! I read alot of your stories, and its helped me. any advice or exercises, please respond. thanks
AnonymousMay 21, 2007 at 8:32 pm
It sounds like you are doing great!!!! Walking with a walker is really good! Keep doing your therapy and exercises and you will see gradual improvement. It is a good idea to write in a journal or on a calendar the little improvements you notice. Then if you have a “down” day, you can look back and see how far you have come! The tingling sensations may be with you for quite awhile. I had a mild case of GBS in August ’06 and mine are just disappearing. They seemed to keep coming back when I was tired and/or sick. Not so much anymore 🙂 though. Be sure to rest, rest, rest!!
Best wishes for a speedy recovery!
AnonymousMay 21, 2007 at 9:44 pm
Welcome to the board. I am glad to se that the I V I G has worked for you and gotten you back on your feet. Patience is the watch word here. it takes a bit of time to get through this difficult body malfunction. Doing your theropy and resting between times is the best thing for you. Allow those around you to help as much as possible. I will be praying for you as you progress along the way.
AnonymousMay 22, 2007 at 8:12 am
Congratulations on the amount of recovery you have already experienced. I’m so happy that you are able to be home with the people you love while you go through therapy. It was so hard for me to be separated from my family in rehab. But with your being back home, I would imaging you’re even more anxious to be back to normal since you’re there in your everyday environment. I found that I felt more “normal” in the hospital than I did at home, because I discovered that there ws more that I couldn’t do back at home compared to the rehab hospital where everything was designed to be easy and where I was getting a lot of rest. I know patience is hard, but it’s a requirement with this condition.
As far as when the tingles will go away and when your body will cooperate a bit more, a lot of that has to do with how quickly your body can repair the damaged nerves. And the thing is, no matter how much PT you do to keep your muscles toned, you can’t speed along the regeneration of your nerves. That’s a long, slow process; that’s all there is to it. It takes months for the myelin to grow back, and the process may even extend into years to be complete. You really can’t predict how long it will take, but it’s just not something you can rush. And to some degree, the tingling may never completely disappear, from what I hear.
I completely understand your frustration, though. I hate feeling the constant tingling and numbness in my hands and feet, the joint pain, the muscle cramps, the fatigue… Sometimes I’m so exhausted from attempting normal daily activities that I can hardly move at the end of the day, and all I can do it just lie on the couch and cry. It’s very frustrating.
Just keep in mind that every day brings you one step closer to getting better, and please try to be patient with yourself. Are you in any pain, or is it just tingling left in your extremities? If you have nerve pain, please talk to you neuro, because there’s no reason you should have to deal with that on top of everything else. If it’s just tingling, I’m afraid it’s just one of the many residual effects we all have to put up with for however long our bodies decide!
Good luck to you.
AnonymousMay 24, 2007 at 12:28 pm
Hi My name is Joseph and I Just got home about a week ago from a 5 week stay in the hospital with gbs. I was down big time and could not move a thing from the waist down. I was on a ventelator. Had a trach. Once I got through with the ICU I improved daily but now it has leveled off. I walk with a cane but not very far or long. My feet still feel like they are asleep all the time and I lost a bunch of weight. I do have a question. Did any of you have a weird smell when you came off of the drugs that they use?
May 24, 2007 at 2:22 pm
welcome to the forum….You will find a wealth of support and info here!
Where are the newest members from?
AnonymousMay 24, 2007 at 4:32 pm
You sound like me 5 days in the hospital getting IVIGs I came home on a walker and felt scared and helpless. I started PT 2 days later and went 3 days a week. in 2 weeks I was useing a cane and walking some without a cane. It has now been 4 months and I am walking with no support. I had a mild attack and only my feet were numb. As others have said recover can be slow. But at times it will amaze you. On a monday my right foot was 90% numb. Wed when I got up I felt something different. I had regained 75% feeling back in my foot and my left foot was almost normal. I do weekley up dates here under updates. I do this to encourage others and also I can look back and see my improvements. Remember less is best. As it was mention here if you over do it it will work against you. You will recover and you have a great support group with the people here. They have been wonderful to me. I turned myself over to God and felt a change in my outlook within mins. May Gods blessings be with you. Steve
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AnonymousMay 17, 2007 at 12:48 pm
Hello everyone, I just happened upon this site and am hoping you will be able to help. My sister-in-law was just diagnoised with a form of Miller Fishers Guillain Barre 2 weeks ago. She went down very fast, started with tingling in legs and had to be taken by ambulance same day. She is now in ICU on respirator. The only thing she can move is her toes, her head a little just as of yesterday. Dr. said it is the worst case he has ever seen. She is only 49 years old. She had a few symptoms about 6 years ago, vision problems etc. but recovered after 6 mo. Dr’s at that time did not know what it was.
If anyone has had GB this severe before could you let us know how long it took to recover? And what you were actually able to understand in this condition. She is answering yes or no by moving her toes. Any information would be greatly appricatied. Thanks so much. Shelley
AnonymousMay 17, 2007 at 1:38 pm
There are many people who can relate to what your sister-in-law is now going through. My case was classified as ‘mild’ but here I am 10 years later with residuals. Everyone is different in recovery and residuals. One thing is that recovery may not come for months, sometimes years. So patience is very important. Taking care of yourself and the other caregivers is important too.
I’m sure more qualified people will respond to your inquiry soon. Take care.
AnonymousMay 17, 2007 at 2:14 pm
There are many here exactly like your sister-in-law and many who were far more worse. They are here at these forums to help and give hope to everyone who seeks it.[/B] She will get better, keep reassuring her of that. Tell her all about these forums and all of the people who got better to some degree, everyone’s healing is so different, it just takes alot of time to heal.
I will keep your SIL in my prayers.
AnonymousMay 17, 2007 at 2:21 pm
hi shelley & welcome,
has she received ivig? this is most important & if she has not, the docs are sorely lacking. it’s the worse case they’re seen cuz a doc only sees a small fraction of the cases we see. with time she will recover. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 17, 2007 at 5:20 pm
Shelley, Welcome to the Family. She can understand everything. gbs doesn’t affect the brain, cognitive wise. she is the same person, the only difference is she is having problems moving her extremeties, the mind works well. Recovery is a slow process, but it does/can happen. gbs affects people differently, and recovery for everyone is just as different. What part of the country is she in? Has she had treatment of any kind? is she on any pain meds? Keep asking any questions you have. Take care.
AnonymousMay 20, 2007 at 4:37 pm
Hi, Shelley and welcome! My Dad also went down very fast. Only able to move his toes and then that too went. He was paralyzed from his eyebrows down. He was on the respirator up until 1 month ago for a total of 8 months. He still has a tracheotomy in and is now able to move his head no problem and is able to shrug his shoulders. Each persons recovery as you will read here is very very individual and as many have posted the acronym for GBS is ” Get Better Slowly”. Although kept mostly sedated my dad was able to understand everything so likely your loved one is the same. Take care and have patience. It’s scary to see your loved one so dependant on those around them but in time you will start to see things come back as I have. We just celebrated my dad having his first solid food (mashed spuds and gravy!) in over 9 months. Make sure the docs have all the info and ask questions all the time. The long termers on this site are an invaluable resource and have so much love and inspiration to offer. When you get sad and angry, come here and any one here will be happy to toss a million hugs your way.
AnonymousMay 22, 2007 at 2:46 pm
I’m wondering if your poor sister-in-law might be oddly lucky. That is, if she has a diagnosis and someone there is giving her treatment, I think she will get better. I’m wondering if it is not better to have an acute episode immediately versus mild symptoms that never get diagnosed until it is too late to do anything meaningful.
I may have been exposed to whatever produced the GQ1B antibody as early as 1996. I’m not sure. I had my first incident of diplopia in 1999. I had the first loss of sensation in my legs in 2003. I was suspected for more than a year in having myasthenia gravis. Then the suspicion was on MS. In the past year I was tested for this GQ1B antibody and that test turned out positive. I seem to have no other testable problems, such as demylination, but I manifest leg pain and spams, a lack of balance and difficulty walking. I now use a cane.
It is only recently I have had anything close to a diagnosis (Miller Fisher Syndrome) and it is provisional. The doctor who asserted this has no treatment to offer, as if I could only qualify for IVg or other things if I had been tested for GQ1B years ago. So it seems I am stuck.
I hope your situation turns out better.
AnonymousMay 23, 2007 at 12:15 am
My husband had GBS last year but his situation was different. However, I have an aquaintance who went through a case as severe as your sister-in-law’s. She was vented for 3 months…. totally paralyzed the entire time. She is now back to being a very successful coach 2 years later. Your sister-in-law will recover!
PS She understands everything. Keep hope alive.
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AnonymousApril 7, 2007 at 11:40 am
Hi everyone. I’m new to the web site but not to GBS. It began in Sep of 1982. Spent 5 months in ICU on a vent, totally paralyzed, apx two years in PT. Got to the point I could walk some with a walker but fell so many times & broke various bones that I now use a wheelchair full time. I work about 30 hrs a week & have a W/C accessible van so life is pretty good in contrast to the past.
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AnonymousDecember 12, 2006 at 1:41 pm
hi all, i’m a new member, living in orlando, fla, i developed gbs in july of this year. after 3 hospitals, 1/2 dozen chest x rays, 8 mri’s, i was told i might have gbs, this is now august. so they do the spinal tap and if comes back neg. spinal tap number 2 is done and comes back positive. treatment is ordered but there is a shortage of plasma. 3 days later it arrives. treatments are over and i go home. home on a walker, but hey i can walk. my hands and feet swell so bad i can’t put shoes on. i still have pain in my hands and feet, and they are still swelled. can’t stand long pants on only shorts for me.and cold weather seems to make the pain worse. but hey, i’m alive.
AnonymousDecember 12, 2006 at 2:59 pm
Hi: Welcome to the site. Are you on any medications, such as neurontin? If not, it might help with your hands and feet and sensitivity to clothes. It sounds like you had a rough trip so hope it gets better for you soon. Do you have any neurologist you might work with? That might help as well. Others I am sure will have good advice for you as this is the place where people know about GBS. Jeff
AnonymousDecember 12, 2006 at 6:15 pm
hi & welcome,
many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. rest can not be overstressed. get plenty of it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousDecember 13, 2006 at 1:43 am
I got GBS in july also. Luckily I was diagnosed the next day when i was transferred to a bigger hospital with a neurologist. I hate to think what might have happened if i hadnt been diagnosed as I was on a ventilator within 48hrs. I was lucky i got IVIG straight away and after 5 days in a coma began to recover slowly but surely. I walked out of hospital 7 weeks later and now almost 5 months later am virtually back to normal.
I am glad you found this site as there has barely been a day since i got home from hopsital that I havent visited the site. There is so much information (sometimes i think the people here know more than the doctors) and it so good to hear from other people who have been through the experience.
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AnonymousOctober 31, 2006 at 9:57 pm
Hi, My name is Bonnie and my husband Bob got GBS in 2002. He was totally paralized for 3 months, on a ventalator for 8 mths. and in terrible pain for a year. It only took 2 days for him to be this way. What a shock. He was hospitalized for 2 1/2 years, that includes at the rehab hospital. Now 4 1/2 years later he is left in a wheelchair and has no use of his hands. It sounds like he is lucky about one thing, he doesn’t have any pain. He did return to work as a project manager for a const. co. but he finds it diffuclt to stay interested.He uses cuffs to use his computor and phone, he also uses a cuff to eat. He was a total sports fan, he played all sports and it was his thrill in life. That is all gone and we find it hard to move on. We have 3 wonderful adult daughters and 5 fabulous grandaughters all under age 2 1/2 years old! How do you find new interests when you’ve had everything you loved taken away?? any suggestions.
AnonymousOctober 31, 2006 at 10:29 pm
i am new here. I had a suggestion for you though. You said your husband went back to work, well since he is able to do that then how about checking into some coaching, or assistant coaching of one of the sports he likes. There are many schools, YMCA’s or city programs that have kids in sports that are always needing volunteers to help. There is nothing like the feeling of being able to help others when we feel so helpless sometimes.
Just a thought.
AnonymousNovember 2, 2006 at 12:19 pm
Just cause he is in a wheelchair doesnt mean he cant play sports. There are quads and paras that play wheelchair sports and there are a lot out there. In fact I am working with my boyfriend on designing something for the front of one of my wheelchairs that will lift the front casters off the ground so that I can get out in the field hunting this year 😀
I will PM you with some more information on this.
AnonymousNovember 3, 2006 at 10:54 pm
Hi, Thanks for your suggestion. It sounds like a great idea but I don’t think he would have the nergy! After work we eat and then he gets into bed. He used to sleep very little before he got GBS but now he can sleep 12 hrs. at night and be tired the next night. He lives in the life of the normal people but he is disabled. It is very hard for him ro watch all the guys at work go to sporting events wtc. and he has to pretend it doesn’t matter. He probably shouldn’t be working as much as he does but if he didn’t he couldn’t do the job he is doing. He can’t get out of the wheelchair at all except to transfer to bed and back to his chair. He told me many tears ago if he were to every to end up in a wheelchair to shoot him! Little did he know. He was 45 when he got GBS and thinks he will die young. I don’t know the stats on life span after GBS. I will continue to email. Have a great day! Bonnie
AnonymousNovember 3, 2006 at 11:02 pm
Hi, You’re probably right about playing sports but he is 50 now(45 when he got GBS) and he is so tired after working all day(6-7 hrs)that he goes to bed by 7:00. He used to hardly to sleep but not now. He lives in a normal world but he is disabled! All the guys at work can go play golf, hockey etc. and he has to pretend it doesn’t bother him. He can’t get out out of the wheelchair unless I help him transfer and he can’t use his hands. It takes us 2 hrs. to get ready in the morning and then at night we have fun things to do like bowel care etc. so we really don’t have much free time. How will your boyfriend hunt? does he have use of his hands? Life would be so different for us if Bob could use his hands, oh well we weren’t dealt those cards! Thanks for the reply.
AnonymousNovember 3, 2006 at 11:09 pm
Hi, I think I figured this out(sort of). I have been thinking alot about you. You are a very wonderful person and to have to go through what you did and still be so positive is so helpful to others. How do you keep yourself busy? Is being on your own so young really difficult? Bob says he will die young, I don’t know the stats of life span after GBS.I don’t like to think what it will be like without him, we have been married 32 years. His health seems to be stable. Was Franks health alright or did he have some problems? If these questions are to hard to answer please don’t. Its to bad people on this site couldn’t just get together and talk and hug and support each other in person.Talk to you again. Have a great day!
AnonymousNovember 4, 2006 at 12:05 pm
Frank did have heart problems and Diabetes, but we thought everything was under control the last few years. Then last year he started going down hill very fast. It wasn’t the GBS/CIDP that took his life, but I feel it contributed to his declining health. He had a heart attack on Christmas morning last year.
Living alone wasn’t easy in the beginning, we were married 36 years when he passed away.I miss him so much. But I knew I needed to start a new life for myself and I am doing pretty good in that area. Now I have my younger son and my new daughter-in-law living with me.
I haven’t worked in 2 years and just this week I got a job. I start next Wednesday. I have worked for Drs for many more years then I like to remember. Next week will be a real new experience for me working in the Psychiatry field.
Don’t forget to take care of yourself Bonnie, I can’t stress that enough.
AnonymousNovember 4, 2006 at 12:55 pm
Brandy, you’re still such an inspiration for everyone on here, despite Frank’s passing. Good luck with your new job. I’m sure it will be very challenging, but I’m sure you’ll be great at it! Your love story with Frank still brings tears to my eyes. I love you so much.
Bonnie, I’m so sorry for everything you’ve had to endure. I know you’re a very strong woman for hanging in there with your husband. Please give yourself a big hug for me.
AnonymousNovember 4, 2006 at 4:03 pm
Many hugs and much love to you. I will always try to stay here and help whoever I can, especially the new caregivers. It was my love for Frank that brought me to these forums in 2001 and I have met the greatest bunch of people. Marge and I say that the only good thing about GBS is that it brought her into my life as my best friend, my sister. I care about all of you so much.
You are all still my family and I love you all. Okay now I’m teary eyed.
Love You Shannon.
AnonymousNovember 4, 2006 at 4:10 pm
For a little fun, you must visit the Lighter Side. We play games and laugh alot about things, it’s good for the soul.
We truly care about one another here, you will feel the love and caring in a very, very short time, plus you’ll make friends and be able to talk to people who truly understand GBS, something that most people don’t understand when you talk to them about GBS. If you need to vent, rant and rave, go right ahead, there are no judgements here, only caring.
Do you think Bob might want to post here if he can? My Frank would never post, he hated computers and was a very private, shy guy.
Oh well, please do join us in some fun.
AnonymousNovember 6, 2006 at 5:01 pm
[QUOTE=bone246]Hi, You’re probably right about playing sports but he is 50 now(45 when he got GBS) and he is so tired after working all day(6-7 hrs)that he goes to bed by 7:00. He used to hardly to sleep but not now. He lives in a normal world but he is disabled! All the guys at work can go play golf, hockey etc. and he has to pretend it doesn’t bother him. He can’t get out out of the wheelchair unless I help him transfer and he can’t use his hands. It takes us 2 hrs. to get ready in the morning and then at night we have fun things to do like bowel care etc. so we really don’t have much free time. How will your boyfriend hunt? does he have use of his hands? Life would be so different for us if Bob could use his hands, oh well we weren’t dealt those cards! Thanks for the reply.
My boyfriend is completely healthy so he has no problems hunting. I am the one who has had GBS and is determined to get out hunting again. This year I may only be able to take my chair out in the field without a gun but if I can at least get out and watch my puppy work I will be happy.
I used to sleep only about 4 hrs a night pre-GBS as well and now find myself needing a minimum of 8 hours a night and could often sleep for 12 hours as well. With regards to getting out an playing sports, its not an all or nothing issues. Not a matter of getting out every day after work to do something as I couldnt do that, however, on weekends where I dont work then I can get out to do things. Its a matter of finding whats importanting to you and finding the way to do it weather it be modified, only on certain days of the week or even just setting aside a day a month to do things. I know I am not the same as I was pre-GBS and even though my legs dont work the same anymore and I need a lot more sleep, I have severe nerve pain, etc. I am still detemined to get to what I consider important things and that includes getting out in the field with my puppy. It may only be to hunting preserves and not in the wild but its will still be time out in the field with my puppy either way.
AnonymousNovember 6, 2006 at 5:04 pm
Also you say that your husband cant use his hands… Does this mean he has no use of his hands at all or limited use? Does he use an electric wheelchair then I assume or is he able to get around using a manual with obliques? Does he have use of his arms and if not, is there no use there or limited use?
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AnonymousOctober 5, 2006 at 2:21 pm
I just found this forum. I was diagnosed with MF variant in November of 2004. I was training for my 25th marathon which was to have been run two weeks after I got GBS. It took me a year to get it done. Anyway, regarding the MF. Along with the pain, my right eye would not stay straight. I finally resorted to a patch. As a small child I was operated on for “crossed eyes” and had to do all the physical therapy treatment to train my eye to stay straight. My opthamologist credits that early training with my recovery from the MF. She said my brain was telling my eye to stay straight, even though the muscles weren’t ready to hold it there. It just goes to show that you never know what good will come out of something. Cheers!!
AnonymousOctober 5, 2006 at 6:37 pm
I just found this forum. I was diagnosed with MF variant in November of 2004. I was training for my 25th marathon which was to have been run two weeks after I got GBS. It took me a year to get it done. Anyway, regarding the MF. Along with the pain, my right eye would not stay straight. I finally resorted to a patch. As a small child I was operated on for “crossed eyes” and had to do all the physical therapy treatment to train my eye to stay straight. My opthamologist credits that early training with my recovery from the MF. She said my brain was telling my eye to stay straight, even though the muscles weren’t ready to hold it there. It just goes to show that you never know what good will come out of something. Cheers!![/QUOTE]
That is so great you did the exercises because my nero opt Dr. told me that there were no eye exercises to do and I would probably always have double vision because I had such a severe case of MF. Fortunately I did not listen to him – stayed with my sister for the lst 3 weeks (6 weeks after the onset) did water arobics and would just sat in the water and try and make my eyes move by watching birds etc. without moving my head. The next week my double vision was gone – I still have some double vision if I look sharpley to the left or right – but straight forward I am fine – unless I am tired.
Thanks for responding.
AnonymousOctober 6, 2006 at 12:56 am
I had double vision as well (when i was finally able to open my right eye) I was so relieved when one of the drs asked if i would like a eye patch so i could watch tv – i wore it constantly as the double vision was very off-putting. When i left hospital that was really the only thing worrying me and i got a referral to a neuro-opthamologist, not that i was sure there was anything they could do. A week after leaving hospital my double vision rectified itself. For a couple of days it was still affecting my outside right eye but even now that is gone.
AnonymousJune 29, 2007 at 3:23 pm
Hello everyone, I had double vision for a month and after that I had Papilledema, that was the worst part, because for the double vision i used an eye patch but with the papilledema I couldn’t do anything because I saw a blackspot that was 85% or 90% of my vision, neuropthalmologist sent me diuretics, it help a little because after 3 years my eyes are not so well and i can’t drive or distinguish people’s faces in bright or sunny places, but I can read better, although some letters disappear and I have to re-read the pages. but i see much better now than three years ago (fortunately) neurooptalmologist didn’t know if I was going to get better, but I am better, little by little. I still miss driving but I know that maybe someday I will drive again.
Be well Winnie
AnonymousJuly 24, 2007 at 11:52 am
Hi Winnie and v-mac
First let me say to v-mac that I am glad you found the M-F thread. Some how it sems to help when others know what you are talking about and M-F is odd.
What the heck is Papilledema? I am extremely farmilure with double vision but I have never heard that term. I also had/have loss of balance which when combined with the double vision gave me motion sickness.
enjoy life, Jim
AnonymousJuly 24, 2007 at 12:57 pm
Definition of Papilledema
Papilledema: Swelling of the head of the optic nerve, a sign of increased intracranial pressure. The optic nerve head, also called the optic disk or papilla, is the area where the optic nerve (the nerve that carries messages from the eye to the brain) enters the eyeball.
The finding of papilledema is made with the ophthalmoscope (the instrument that shines light through the pupil illuminating the retina while the doctor looks through it). The optic nerve head is abnormally elevated in papilledema, almost always in both eyes.
The causes of papilledema include cerebral edema (swelling of the brain, as from encephalitis or trauma), tumors and other lesions that occupy space within the skull, increased production of cerebrospinal fluid (CSF), decreased resorption of CSF (due to venous sinus thrombosis, meningitis, or subarachnoid hemorrhage), obstruction of the ventricular system within the brain, hydrocephalus, craniosynostosis (premature closure of the sutures of the skull), and a condition called pseudotumor cerebri.
The finding of papilledema requires immediate further evaluation and, if need be, intervention. Also known as a choked disk.
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AnonymousSeptember 7, 2006 at 3:15 pm
Hi. I am new to this site and to GBS/CIDP. My husband and I returned from Mayo Clinic on September 1st. The neurologists there diagnosed him with CIDP. We have been searching for answers for over six months and finally got them.
I have been reading the postings here and am really confused. I asked the Doctors at Mayos if “chronic” meant forever. They told me no. That in time with IVIg, my husband will recover. However, I am reading postings from people who have been dealing with CIDP for upwards of 7 or 8 years.
Are the doctors lying to us? Is recovery possible. Thanks. You input will be greatly appreciated.:confused:
AnonymousSeptember 7, 2006 at 3:25 pm
Hi Jenny and welcome to our family.
This is what meriam webster says for chronic, my understanding is that I will always have it (CIDP), although it may not be active.
3 entries found for [B]chronic[/B].
To select an entry, click on it. chronic chronic fatigue syndrome chronic obstructive pulmonary disease Main Entry: [B]chron·ic[/B]
Etymology: French [I]chronique,[/I] from Greek [I]chronikos[/I] of time, from [I]chronos[/I]
[B]1 a[/B] [B]:[/B] marked by long duration or frequent recurrence [B]:[/B] not acute <[I]chronic[/I] indigestion> <[I]chronic[/I] experiments> [B]b[/B] [B]:[/B] suffering from a chronic disease
[B]2 a[/B] [B]:[/B] always present or encountered; [I]especially[/I] [B]:[/B] constantly vexing, weakening, or troubling <[I]chronic[/I] petty warfare> [B]b[/B] [B]:[/B] being such habitually
AnonymousSeptember 7, 2006 at 3:25 pm
Hi Jenny B, welcome to the family. Ask all the questions you have, I’m sure someone will be along soon to give you their answers, opinion, or story. You might want to ask your cidp questions on the cidp thread, more people with the same experiences usually post on that thread. Hope your husband is doing ok and taking it easy as necessary. Take care.
AnonymousSeptember 7, 2006 at 3:49 pm
Hi, Jenny, and welcome.
It’s not that the doctors are lying, it’s their definition of chronic. My medical encyclopaedia lists chronic as being in opposition to acute. Acute is of sudden onset and short in duration. Thus GBS hits quickly and then ends (although many are left with residuals, some very debilitating; stroke is considered to be acute, even when it leaves the patient comatose). Chronic disorders, such as CIDP, persist for a long time and/or may be prone to flareups or relapses, although there may be periods which are essentially symptom-free. And there are a few who recover completely and never have another relapse–the CIDP seems to burn itself out.
One thing to bear in mind regarding these forums is that many of the people here are the ones who have continuing problems. Many of those who no longer have major problems or who get used to them drift away–as one friend of mine said, he just wants to get on with his life.
I’ve had CIDP for twelve years. The first five were with autonomic problems which went undiagnosed; in 1999 I started having problems with my feet and was finally diagnosed in 2001, when I could barely walk. IVIg set me back on my feet, and until last year I had very few problems. Now the disorder has changed, but I’m still in better shape than I was in 2001.
I tell newcomers to give it a year before settling on how the disorder and its treatment are effecting them–it takes time to figure out what you’re body’s doing. And keep a journal, listing symptoms and treatments, highs and lows. By this time next year, you and your husband will have a much better idea what to expect next.
Best wishes in the battle,
AnonymousSeptember 7, 2006 at 6:35 pm
I am one of the members with CIDP. I think we are all told that there is no cure, so if “recovering” means you are cured, you don’t recover. But, the good news, if “recover” means you get better and stronger, then you do recover. IVIG’s are usually tried first and the purpose of the IVIG’s is not to cure you, but to CONTROL the progression of CIDP. And we do have HOPE, because once the progression is controlled, we can HEAL and we can become almost as good as new.
I was diagnosed with CIDP in 1998 and I stopped progressing. I have remained stable and have not needed any syndrome medications since 2003, but since I was severely damaged, I will be left with alot of residuals. Someone with mild damage, could probably heal almost 100%.
NEVER EXPECT TOO MUCH TOO SOON THOUGH, healing comes slow, look to months or years, rather then days or weeks.
AnonymousSeptember 7, 2006 at 7:22 pm
Unfortunately I cannot help with any great information upload on CIDP. I am still learning more each day about my own recovery from GBS. However, as you read these forums, I do highly recommend you heed the advice of previous posters in that, frequently, many of the active participants on this site are either struggling through neurological issues right now, or continue to have problems from their neurological disease / syndrome. It is my belief that many (majority?) of the people having amazing success stories and rehabilitation have “gotten on with their lives” and so you get a somewhat biased view, at least statistically, from reading these threads.
Please understand, I am not belittling any condition, GBS, CIDP, or otherwise. I just want to forewarn that if 9 out of 10 posts here are negative or questioning, it is likely that less than 90% of the disease contractors are chipping into the discussion. As we progress, we move on, in general. Although, I will also be the first to admit how much I truly appreciate the many people who continue to post and support others, or who have chronic issues and continue to support so we “beginners” like myself can learn.
AnonymousSeptember 7, 2006 at 11:31 pm
I thank you all for your input and advice. I feel quite a bit better. I will check the CIDP threads. I do want you all to know how much I appreciate your experience and input. Thank you again and I wich the best for you all and hope I can become as supportive as you have been.
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AnonymousAugust 10, 2006 at 9:36 am
Hi! I’m new here and just looking for someone to chat with. I’m a 21 year old college student from PA.
My dad was diagnosed with CIDP 6 yrs. ago. It will be 7 years in December. I don’t know one other single person that has this illness, let alone a 21 year old that grew up having to deal with a parent suffering from this illness. I was just 14 when he was diagnosed, and I have had to grow up a lot, and I think much sooner than other kids my age. I thank God every day that my dad doesn’t suffer from a terminal illness, and I often feel guilty knowing that things could be so much worse. But my dad’s illness has taken a toll on everyone in our family. It’s unfortunate, but the local hospital has become some what of my family’s second home. God bless my mother, she has been his care giver and has stuck by him through it all and she herself suffers from complications of diabetes.
My dad isn’t someone that expresses his feelings very often, so even after nearly 7 yrs. of living with CIDP, I don’t know how he really feels about his illness, or how he deals with it on a daily basis, it has never been discussed. And I’m afraid to bring it up, in fear that I may get him upset. I know he is often frustrated and he is much more emotional then he ever was before he was diagnosed. It’s hard to watch someone you love so much become a different person because of an illness. I’m just looking for someone to chat with, because although my friends are always there to listen, they don’t understand where I’m coming from. I just want to know that there are other young adults out there that can relate.
Sorry I’ve rambled on so much!
AnonymousAugust 11, 2006 at 9:53 pm
Hi Trish and welcome to our family. I’m Sorry to hear your father has CIDP. I’m glad you found us. The members here are all very supportive. This is a good place to share feelings, ask questions, and sometimes even have a good laugh. Since your father doesn’t share his feelings with you, maybe you will get some insight into the world of CIPD here. God bless your mother for being a great care giver over the years. I also want to congratulate you on your academic goals. I think that’s fantastic. You might want to do your posting under the adult CIDP forum as that forum is more active and full of information and shared experiences. Take care.
AnonymousAugust 13, 2006 at 5:00 pm
Welcome! My husband is recently diagnosed this past year, and it is something we all struggle with daily. My daughters are 13,11,8- a little young for you, and I’m a little old at 43, but we are all dealing with the same frustrating yo-yo- and a dad/husband we adore but who isn’t very verbal. Email me direct if you ever wish to speak to any of us. Good luck- remember, love conquers all- even with Dads!! Sigrid
AnonymousAugust 23, 2006 at 8:57 pm
Hi Trishie, welcome to the forum. I am sure you will find it very helpful. I can understand what it is like to have a father who doesn’t share what’s going on inside of him. I grew up with one like that and all throughout my adult life things never changed no matter how much he was in pain. He was a stoic all his life.
Now I am on the other side of the fence. I have grown children and do share with them and my wife Carol what is happening. Maybe I learned from my experience with my dad. I find this helps me deal with my CIDP and all the frustrations that come with it. Mostly I do have a positive attitude, perhaps because I talk about things. Posting on this forum and reading the posts of others also is a great help as it is for many others.
I don’t know what the best approach would be. Maybe letting your dad read our stories on the internet would be a good start. Maybe it might actually get him interested in this forum.
My site address is below. “ericvance.com” is a good one, too. Good luck.
AnonymousAugust 28, 2006 at 3:36 pm
I couldn’t get on to your story and would like to read it-can you help?
what webpage if there is one?
Tell me, if you could have one wish-that your wife would understand one thing-what would it be? How does a caregiver give care without being a drama queen or a martyr?
We don not feel like martyrs but when someone compliments us on care-giving, it’s like a diss to the person who is ill and I don’t like it.
I didn’t know about the swallowing part…do you have that too?
How can a caregiver truly help emotionally?
AnonymousSeptember 4, 2006 at 12:15 pm
Carol tells me that she wouldn’t call it ‘drama queen’ bu its normal to sometimes be scared and frightened. Other times she might do more than is needed or forgets how to take care of herself. A “martyr” would say to herself “poor me”, something she doesn’t do. She also comes out and asks me to do something she knows I can do.
Sometimes I wished she would not be so overly watchful. She tends to think of the worst whenever I drop something or make some other sudden noise. Her first thought is that I fell down the steps or fell in the shower. I have never fallen inside the house, just outside a couple of times. But usually, we handle most situations pretty well. Since my symptoms have been progressing fairly slowly, we’ve been able to adjust to the changes. I’ve learned to accept help and she’s learned when to give it and when not to.
I don’t think its a disrespect to me if someone would compliment her for being a caregiver. It is not easy to be a caregiver and on top of that having to give up many things we liked to do together – hiking, camping, gardening or just simply walk around the shopping center at a normal pace. That must be hard for her sometimes but she doesn’t complain – and she doesn’t feel like a martyr. It’s just accepting things the way they are. Of course, we are only human and sometimes we both get frustrated. But that feeling passes.
About swallowing: sometimes food does get stuck and I have to wait a few minutes to go down. It’s a very awkward feeling. Just had a barium swallow test last Friday. Have to wait for the results but there didn’t seem to be anything unusual except acid reflux because of a hiatus hernia that has been diagnosed many years ago.
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AnonymousJuly 9, 2006 at 7:44 am
Finally diagnosed in June 2004 and been on IVIG since with little to no help. Five treatments in a row ended with major problems. Nov. 2005 phneumonia and ended April 2006 with DVT. Stopped treatments for two months. Started back last week with a little benefit. I think my neuro has given up because I sense an attitude. He said IVIG could not cause these problems, but my care giver said he changed my usual dosage last week in fear of another blood clot. Anyone else with this kind of reaction? My dosage has been 62 grams per day for three day infusion every 4 weeks. THANKS
AnonymousJuly 9, 2006 at 4:20 pm
Welcome and glad that you “found” us! I have no experience with IVIG or PP as treatment wasn’t readily available “back then”. I often wonder how different my long term residuals might have been . . . Others will be along soon to share what they know. Questions are always welcomed here ~ just as you are 🙂
AnonymousJuly 9, 2006 at 6:14 pm
I have never had IVIG, so I dont speak from first hand knowledge (only plasmapharesis for gbs), but I know that some members of the forum speak of being allergic to IVIG, I’m not sure if phneumonia would be considered an allergic reaction. Some members have even mentioned that they believed certain ‘brands’ are better than others. I just thought I would throw that out there in the hope that maybe someone would respond.
Im trying to remember the results of a poll we had on the old forum asking people if IVIG helped them and also if Plasmapharesis helped, and If i recall correctly (i hope 🙂 ), there were a few (Im not sure how many, I think not many at all) who didnt find that IVIG helped.
AnonymousJuly 9, 2006 at 7:26 pm
[FONT=”Comic Sans MS”]My wife had ivig several times in 2004, then again in 2005. It never did help her at all. Then the last time she saw the Neurologist, he wanted to start this again. It hasn’t helped her at all anytime they did it on her before, why do the stupid Drs think it’s going to help now.[/FONT]
AnonymousJuly 10, 2006 at 5:47 am
I dont know if I had a reaction to the treatments or they brought out an infection. Those five times sure caused something! GAMMUGARD is the best for me because of the lower Iga. Over the last two years I’ve had my share of bad reactions, skin rash, headache,etc… My doc has not offered any other therapy as he says he gets his info from the Mayo. The Mayo has not even seen me, so how do they know whats best. The CIDP started over four years ago and took two years to diagnose. The progression of this is slow, but in four years I can barely walk. My doc said I was the first patient he was able to treat. What does that mean? He now has other cidp patients who I understand is responding to IVIG, but I’m not.
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AnonymousMay 29, 2006 at 2:00 pm
My name is Don, this is a great site! I have had gbs since 4/29/06. I am finding it hard to type so for give any mistakes. I have learned more from this site then from the Doc’s. Iam still losing nerves in my face. Dose anyone know what will help?
AnonymousMay 29, 2006 at 5:06 pm
Welcome and glad you found us. I didn’t have issues with the nerves in my face, however others have and they mentioned a process called e-stim which uses electrical stimulation on the nerves. I really know nothing about it so I will let others fill you in. There was much more information on this in the old forums but that information was lost. Anyways welcome to the family, glad you found us, but sorry you had to 🙂
AnonymousMay 30, 2006 at 1:01 pm
You could always see a speech therapist. They can recommend exercises for you to do to help with your speach and facial muscles. I am just over one year out and I still have muscle weakness on the right side of my face. It is slowly getting better. I saw a speech therapist while in the hospital and continued doing the exercises after I got home. So, I am much better now.
AnonymousJune 1, 2006 at 6:29 am
I got GBS in Oct 05 and was paralyzed in the left side of my face including my tongue which affected speech and swallowing. I saw a speech therapist in the hosptial and she showed me some tongue exercises – basicly stretching my tongue as far to the weak side as I could, curling it etc. It took about three months for most of the paralysis to go away in my face. In my opinion, regainig coordination in your face is like the rest of your body, the nerves need to heal and some physical activity wihtout oveworking any of your muscles, will help build them back up.
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