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.

It might help to write down your questions, and the answers.
Don’t assume anything; go for full communication.
All the best!

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.

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!

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.

Hi Michael,
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.
Laurel

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!

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!

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!

Hello Jaymes,

Thank you for sharing your story and your experiences thus far. It’s certainly inspiring to read good news, especially as GBS and CIDP can have long reaching life changing issues.

Take care,

Tina

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! 🙂

Hello Jaymes and welcome. Its great to hear of such a steady and some what fast recovery. I am curious as to what treatment you had at the hospital.
Ron

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

Hi Jet,
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

sorry no info

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!

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.

Goood Morning,

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.

Take care

Sherry

MDM,
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.
Hugs

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!

Hi mdm, Welcome to The Family, and this side of The Pond!
Keep your positive attitude going and you’ll be back to a new norm soon. 🙂 Take Care.

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

MDM,
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!

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.

Paula

Hello
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
Ron

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

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!

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.

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.

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.

Hi Cathy!
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.

HUGS!

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…
Pam

Welcome! Great family here with wonderful input. Glad to see you have joined but sad that you are added to our list of being sick. I hope you recover soon and wish you well.

Hi Cathy,

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!

Hi Cathy:

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!

[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:)[/QUOTE]
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

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.

Jim C

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.
Emma

Sorry, this took so long but the Adobe document was too big to post. To make a long story short it is now Word document. If you have any problems opening it send me a e-mail or PM with your email address and I’ll send it to you

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.
amy

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.
WithHope

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.

IH48:

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.

Lee

Greetings LH,

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.

Micheline,

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!

Take care
Rhonda

Micheline,
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
Take care
Shirley

Micheline:

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,

Lee

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
GBS 3/07

Hi Micheline,
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

Hi Micheline,

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

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.

Steve

Steve

Any news as to when your appt will be with Dr Gibson?

I would phone her office daily and ask when the appt will be!

Let us know.

Rhonda from Canada

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.

Steve

Time to start squeaking! 😀
My family doctor must be very squeaky…I had my appt within 2 weeks!

Rhonda

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.

good luck!
jamie

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.

Emma

Micheline,

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.

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!

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.

Hi Micheline,
Glad you are seeing the doc, hope all goes well.
Dawn

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!

Micheline, Maybe you could ask your dr./therapist for a raised toilet seat. Or you could purchase one. They were a life saver for me when I was home alone. I got mine through the OT department at the rehab center.

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.

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.

Tobias:

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.

Lee

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

Hi, welcome,
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!!!
Dawn

[B]Hi,

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]

[COLOR=black]Hello Tobias,[/COLOR]

[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]
[COLOR=black]MarkEns[/COLOR]

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.

Jerimy

Hi Julie

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 !!

Debs

Hi Julie

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)

Hi Julie,

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!

Just thought i would let anyone who is interested know that i have started a group on Facebook called GBS Australia Support Group – hopefully people looking for other Aussies with GBS will find it.

Hi Julie,

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.

Regards,
Debbie[I][/I]

welcome Julie,

You will find lots of good info here. Ask lots of questions. There is usually someone who will have some ideas or suggestions for you.

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.

Take care,

Julie

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
GBS 3/07

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.

Hello ElizsabethA,

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.

GB

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..

Elizabeth,

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.

Jerimy Schilz

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.

GB

ElizabethA

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.

Dear Elizabeth,

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.

Warmest regards.

Jethro

Elizabeth,

If a phone call from a fellow GBS Survivor would help please feel free to email me: jerimyschilz at hotmail.com or call me 734-929-4653 and I would be happy to speak to both of you. Take care and hang in there.

Jerimy

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!

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.

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.

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.
Emma

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

😎 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.

Rachael

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.

Take care

Rhonda from Canada

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.

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

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.

Welcome to the family. We are here to help however we can. Please take care of yourself.

Jerimy

Sorry to hear about your situation but you have found the right place for answers. The people here are aware, informed and willing to share. Come here often and you’ll never be alone.

Peace
Michael

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!

Carla

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 🙂

Welcome Smiley,

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 🙂 )

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

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.

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.

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.;)

Alma
GBS-MFv-1993 and 2004

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!

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.

Bluebonnet

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 😮 🙂 )

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.

ali,
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

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?
Pam

Hello Bluebonnet,
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.

[IMG]http://img402.imageshack.us/img402/2387/welcomebluedoorab1.gif[/IMG]

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

valerie,

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
281-292-1508

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

hi alyse & welcome,

toledo – mrs. joyce filas – 419-531-6810

take care. be well.
gene gbs 8-99
in numbers there is strength

welcome
‘

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.

Hope you dont mind, I just copied your post from General questions:

Charliegirl wrote:
[QUOTE]
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
Charliegirl

[/QUOTE]

Charliegirl,

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:

[url]http://www.rxpgnews.com/research/Molecule-that-destroys-bone-also-protects-it-new-research-shows_29868.shtml[/url]

Best wishes
cd

by the way, it is delightful to hear of such a kind and caring physician

Charliegirl,
I have been diagnosed with CIDP. While on vacation I developed a sinus infection. That cleared up, but I now have pain in my upper teeth. I’m headed to the dentist tomorrow to check it out. I’m betting it has nothing to do with CIDP, but…

Hi,

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 😮

Hi Charliegirl,
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.
Linda

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.
She wrote
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
[url]http://www.gbs-cidp.org/forums/showthread.php?t=2883[/url]
and my posts on prednisone
[url]http://www.gbs-cidp.org/forums/showthread.php?t=2929&page=2[/url]

Sue

Welcome to the forums Charliegirl!

Charliegirl,

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.

Jerimy

Hi Donuts,

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?:)

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!

Hi Tracy!!
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!

Leanne

Hi Tracy,
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.
Mary Ann

hi tracy & welcome,

you must fully recover from any exercise in 12 to 18 hours or it is too much & will hinder recovery. the turtle wins this race, not the hare. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi, Tracy.

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.

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?

welcome to the forum….You will find a wealth of support and info here!

Where are the newest members from?

I am from Washington State

Hello Tracy.
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

hi joseph & welcome,

gbs has caused many members to have funny tastes. others may comment on smell. take care. be well.

gene gbs 8-99
in numbers there is strength

Welcome to the family Tracy, rest, rest and more rest as your body is healing.

Jerimy

Hi Shelly,

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.

[B]Hi Shelly,

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.

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

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.

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.

Hugs,

Hi Shelley,

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.

Hi Shelley,

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.

Stu
Welcome to the web site. I have and still do find good information and caring people. Thanks for telling us some about your history. Looking forward to hearing more from you in the future.

Hi Stu,

Welcome and Thank you for posting your story.

Nice to meet you Stu, thanks for sharing your story. Hope to get to know you better. Take care.

Jerimy

Hi Stu, Welcome to the Family. Keep up the good work.:)

Hello Stu and Welcome! It is nice to see someone return to work and show us that it takes time to get stronger. Hope to read more posts from you and your experiences!

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

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

welcome and glad that you found us.

Jerimy

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.

hi bonnie,
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.
🙂

Hi Bonnie,

Glad to see you made it in here without any problems. Did you get my last
message today? Talk to you later.

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.

Hi Bonnie,

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.

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.

Love, Shannon

Hi Shan,

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.

Bonnie,

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.

Hi there,

Not much I can add beyond the posts of Donna and Shan. I was just wondering if coaching might be a good fit for him. I have had to give up most sports as well and I know the passion never leaves.

Jerimy

[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.
Bonnie[/QUOTE]

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.

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?

[QUOTE=vmac]Hi,
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.

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.

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

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.

Winnie

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

per medicinenet.com
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.

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.

[B]chronic[/B]

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]
Pronunciation: ‘krä-nik
Function: [I]adjective[/I]
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

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.

Hey Jenny,

Welcome. There is a CIDP section where you need to go for all the expert specifics in more volume then you’ll get here. Some will be by shortly here too.

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,

Deb

Hello Jenny,
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.

Hi Jenny,

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.

Best regards.

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.

Hi Trish and welcome, we have a wide variety of ages here and we are all here to help however we can. I think it’s great that you came here to help understand what your Dad is going through.

Jerimy

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

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.

Norb:
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?

Norb & Carol:
i got it-it’s excellent-now I want to read everything you had to say…………will talk later

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.

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 🙂

Terry,

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.

[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]

Don,

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 🙂

Jerimy

hi don & welcome,

ivig or pp if you haven’t had them yet. take care. be well.

gene gbs 8-99
in numbers there is strength

hi and welcome. I just got GBS in April also. I did get nerve damage in the right side of my face. I still got it and it is almost June. It is starting to improve though. There is nothing really you can do. It will eventually go away from what I hear.

Hi Don,

I had paralysis in the right side of my face and it just took time to heal. My doctor told me to keep trying to smile and this may help to strengthen it again. It got better over about 4 months.

Debbie

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.

Tonya Correll

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.

Don,

A little while after my facial muscles were effected, my breathing was effected too, so I am wondering how you are doing now? Please let us know.