Ok, I want to say my rate was 100but fr reading that must be wrong so on second thought, it was 50. I made them hold it there. It took over seven hours, I was pretreated with benadryl and a very high dose of tylenol.
My veins turned hard and sent a red streak up to five inches, they had to change my IV over and over. The wart like growths are too big for tags, the one is half the size of a pencil eraser, I hate it.
My dr. has said I cannot have anymore treatments. I had three infusions of steroids this week, 1000 mls a day. I think they ran them too fast. We did it in the day hosp. I came home every night. I have never felt more nuts, the last one was yesterday. Thought processes off the chart whacky. No sleep. They used solumed, I think that is correct.
As for the ivig, I have never had the option of brand choice. I get what they have. And it comes without a brand label. I know that it has been 10% but this time it was stronger, hence four days vs five.
I cannot say that I feel a been it fr the steroid. My other option was 80 ml for 6 mos. I cannot do that.
These are common problems; for most of us, sound and light stimulus is very jarring to our damaged nerves, particularly during onset and initial recovery.
A couple of suggestions to diminish the shock, discomfort & disorientation:
1. Ear muffs, ear-phone pads from old electronic equipment, or foam ear plugs (thrift shop, hardware store)
2. Sunglasses, or foam eye mask (dollar store (looks like the “Lone Ranger Mask” except no eye-slits)
He could keep these things handy in a back-pack to use whenever he’s dealing with light or noise stress.
One question, you mentioned that your son puts your hand over one of his ears to block out noise. The other ear too? Some of us had initial hearing loss in one or both ears, so something to check out for his safety.
Miguel has both Lupus and GBS. He will be in the hospital 5 months on August 26.
GBS was diagnosed first when he got paralyzed and got in the hospital on March 26. We did not know anything about this disease. I remember we start searching like crazy in the internet and we never thought he will be this long in the hospital.
They diagnosed the Lupus 6 weeks ago, and after treating it, and having a second set of plasmapherasis he started to move, so he was totally paralyzed for 3 months from head to toes and on a ventilator from day 1.
Is been a journey for him and all the family. Sometimes we will think he was going to die from Neumonia and other severe infections that he had.
He will get in the computer soon and you guys will be able to meet him and write to him. He knows I am in this forums and when I saw him, I told him about all your stories.
Today he is doing much better. The Doctors are talking about totally weaning him off from the ventilator next week. He is moving All his upper body almost perfect and getting a lot of physical therapy on his legs.
He will be out very soon. Today the time is not what is important but what he has improved.:)
I will keep you posted!!!
I think I understand from your comments that you have not been taking steroids for many consecutive days at a time, but rather “pulsing” yourself with steroids–in which you have had the steroids over 5-7 days every week or two. You also do not mention a known chronic immune mediated disease (like CIDP which is common here). Pulse steroids are different from daily long term steroids in the “dependence” mechanism. You are not as much at risk of the classic adrenal suppression where the adrenal does not work, but ARE at risk of your body not being used to or able to mount stress responses (because it does not have to–the oral steroids do that). You realize that self-medicating is not wise, however, the underlying process –terrible asthma and terrible eczema–were intolerable to you. To get a smart and safe transition off of steroids, you need to have help of a physician that will see both of these. There are a lot of ways to treat asthma and eczema OTHER than systemic steroids. Think carefully about what causes you to feel the need to pulse steroids. Is it breathing problems or terrible itching? If so, to safely stop, you probably will need inhaled steroids or something like Advair for the asthma and topical steroids for the skin. The point is that there can be a medical reason that your body has felt better on steroids and that this needs to be addressed as part of finding a better and safer way to control the asthma and eczema.
Part two. People feel better with steroids and you say this in your post. You may have very real medical reasons for steroids that your body was telling you, but there is very often something addictive about steroids AS WELL and it is really hard to separate these apart completely. One important way to help get over this can be NOT to stop steroids cold turkey (that is hard medically and mentally), but rather to spread them out so there is not the ups and downs. You, then, get the medical benefit, but not the “rush” of a pulse. For example, if you take 25 then 20 then 15 then 10 then 5 mg a day for five days every two weeks, you get close to the same amount of steroids by taking 10 mg every other day. It is probably better to stop to either change to this and then slowly go down to, for example, 7.5 mg every other day for two weeks, then 5 mg every other day for two week, then even slower from there OR to reduce the “height” of the pulses–for example, starting at 20 then 15 then 10 then 5 mg for two times, then 15 then 10 then 5 and slowly decreasing from there. The point is that your body and mind have gotten used to the pulse steroids and it will be very hard and not very safe to stop them abruptly.
None of us advocate “self medicating”, but when people do this, it is important to think not only about fussing about the danger of that, but also that there may be a very real underlying desperation to have something be different and better. It will not be safe and it will be really hard to stop steroids without helping what this was as well. I hope that this makes sense and I hope that you get a good plan to safely get off the steroids.
Left clicking is like your finger. You say I want THAT. That’s what the left clicker is for – you pick out what you want.
The right clicking is for your options.
Steps to copy & paste:
1) LEFT click on the link & slide the mouse over it (it should light up in blue)
2) RIGHT click over the link (a little box should pop up)
3) LEFT click COPY (the box will disappear)
4) Move your cursor to the area where you want your text to be moved to
5) LEFT click (the cursor will move to that area)
6) RIGHT click (the box will pop back up but with less option)
7) LEFT click PASTE
There ya go.
Does this mean I have found the one that will help with the instructions for the site 🙂 just put in your current user name no password needed for the Live Chat tab.
Sorry for the delay! You guys wouldn’t believe our day. I think we spent maybe two hours at home until 8:00pm. I had my dc appt had a minor procedure came home something went wrong had to go back in the meantime, husband has to get kids out early to get me back to doc. However when he gets them our daughter is pale in tears and complaining that her left side hurts. My hubby calls his dad but somehow they work it out that we are going to DROP off our children at their house. Mayhem… Anyway she is fine and I won’t bore you to death about our 3 our emergency stay. I am fine too. The exciting part was how much I walked yesterday. The bad news is I haven’t been able to do my part on the survey yet L:(
How all of you are? I am visiting this site after August,09. I do not know how I stopped visiting this site… but somehow I missed it..
Anyway, the subject seems to be interesting .. My blood type is B negative .. with about 5 years old GBS.
I would like to know more about it.. pl keep posted.
Hi Yolanda, it must be very hard for you to see your Mom like that but let her know that there are other people out there that are with her and that have been throught the same things that she is going through and she’ll make it….I was diagnosed with cidp in May 2008 after a 77 day go in ICU were I was totally paralized and had a treck I also developed anmmoina (sorry for the spelling lol) and was on ivig, steriods fentinol, gabapentin just to name a few, what a nightmare!!!!! I walked to work everyday 5miles and was very active it knocked me for a loop…but when I left the hospital I was using a walker and now I can walk and do most things that I could before and am taking no meds at all so tell your Mom to hang in there (I was 51 when all this came crashing down on me and my family) it well get better and there is a light at the end of the tunnel if you need to talk I’m here and if your Mom wants to talk thats even better….but we are all here for both of you..keep well and hang in there Brenda:)
I was treated at Duke last October! Aso been to University of PA Hospital. Both places are good places. Mark Brown Dept of Neurology at University of PA Hospital and Jules Vern at Duke Medical Center, Neuro Sciences Building! Both seem to be good doctors! Mayo I know nothing about but have heard it was really good! Hugs
I am 69 years old and have had GBS three times, the last time in 2002. I can play my piano but don’t do it much as I get tired sitting at the piano a long time. You can get better after two years. Good luck to you.
Glad you found this group as there will be heaps of answers here to many of your questions.
Am sorry you have joined the ranks here, as it definately is a challenging condition to conquer!!!!!!
You have already had good response from fellow CIDP’ers (or others with experience etc) so wont repeat the info, as MarkEns says it is all so very individual as well and unfortunately drugs/treatment can take time to show their benefits, and to get true accurate pictures of what is going on is a sure test of ones patience.
I especially wanted to pass on my hope that things turn around speedily for you, yet when things seem pretty gloomy progress often never appears to happen quickly enough!!!
Also in my experience (was diagnoised 2 yrs ago, and at worst was a quad status) it helps to keep things in perspective on a daily basis, I felt i never had far to look to find others worse off. I too felt the timing couldnt have been worse, (was primary caregiver for 3 children 2, 4 and 6yr olds, and a very partime nurse – as never believed in placing my children in childcare) yet in hind sight with all the support and love shown over these harrowing times it was the ideal time in a way, and by taking one day at a time we got through those pretty dark days. My family have grown through our battles and are stronger and wiser for it. My now 4 yr old still recalls being strapped into my power wheelchair as my arms couldnt hold her securely as we walked the other 2 children to school. (Now we all literally race to school!!! – or i piggy back the 4 year old!)
Accept all offers of help. People feel useful doing what you may consider mundane chores, and they dont offer if they dont want to help so dont hold back in accepting their offers.
All the best and am pleased to see you have been started on the right track treatment wise.
Hello! I was reading your other posting but don’t have the experience in this to answer your question. But I just want to let you know that I am praying for your son and hope he gets well soon. You have certainly been through quite a bit. Any time your child gets sick that takes a huge toll. You worry sick and can’t help them like we as mother’s normally can! Wishing you my best! Sending Cyber Hugs your way!
Well the Phenergan would certainly help the nausea and vomiting but the other drug is still a steriod. Maybe tylenol with Codiene would help. Or taking a low dose of that steroid to see if it effects you in any way. I would ask lose dose first before taking it full fledge! Some people can’t take steroids and you might be one of them. Topamax is also great for migraines. Ask your doctor if any of those drugs could help! Feel for you so badly!
I get really bad migraines anyway and when I feel one coming it takes alot to get it controlled. 800mgs Ibuprophen, 1 300mg Gabapentin, 1 Tylenol with Codiene and 1 `10mg of prednisone! Now that’s a bad headache! LOL! If I don’t take that regimin, I start puking my guts out and then have my head dived in a pillow with cold rag on my face! Hate nasty headaches! Hope they get you feeling better soon! Hugs
What a terrible time you are having! I can only say that I feel for you as you go through all of these difficulties and traumas and worries. I too have had many things come crashing down on my life at various times, and I know how hard it is to face it every day and keep trying to cope. :confused: I pray that the Lord will send His answers and help to you and your family.
God Bless and keep you!
I don’t have GBS but CIDP but I just wanted to wish you and your family my best and hope your sister gets well soon. It will take her some time for healing and the more she is able to do the best of her chance in recovering. Lets just hope she starts getting some improvements soon and gets well soon. I will keep you in my thoughts.
I hope you get lucky for your wife and find the brace she needs! She sounds like my mom! My mom is so close to being in a wheel chair herself but refuses to give up! Let your wife do as much as she can. She sounds like a fighter and it trying so hard not to let her legs give into that wheel chair! She’s trying so hard and that I admire her for! I wish you and your wife my best and hope that she never see’s that chair! I will keep her in my prayers! Hugs!
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!
Way to Brandy! She is indeed a fighter and am glad she is achieving her goals and I wish her my best and pray she never see’s the GBS ever again. I will keep her in my prayers and hope all goes well for her. Great to hear she is doing good but hope the GBS stays away!
It’s in the Adult CIDP Section. It announced a problem we had over the weekend and was telling all the members to read the rules and regulations in here. Telling us to watch what we say to others and not to offend anyone. Just being careful of how we say certain things that might offend another person. First time offense is a warning, second time is being kicked off the site. Hope this helps!
I could not take the Cymbalta either! Gave me the panic attacks, upset stomach, chest pain and the drug scared the living heck out of me. Lyrica makes my head feel funny but does not relieve the nerve pain at all. And Gabapentin the generic for Neurontin, I can’t take either. Something different for I took the name brand and did okay but had the weight gain too. Effexor is another one that does not like me! It causes more numbness and tingling. And that drives me nuts. I am going through a medication problem too right now trying to get on the right regimin.
Welcome to the forum. I am a newby in posting. I was diag. April 2007. I was not completely paralyzed so the ventilation part of the process I can’t help with. Thank God!
I admire you for standing by your brother. That is the most important thing you can do for him right now. I remember when I was hospitalized (for 1 mo. total) having my family with me and supporting me made all the difference in the world.
If Andy is as strong as you say he is, he will get through this. I’m no saying it is going to be easy, but with the family support he has is most helpful.
Since I have been posting and venting some of my feelings so many others have helped so we are here for you and Andy. One thing I keep hearing that I have found to be so true is GBS stands for “GETTING BETTER SLOWLY”.
GBS does not go away as rapidly as it comes. So stay with Andy and stay strong and he will progress from your strength.:)
As far as the not sleeping. I had a rough time sleeping because of the severe pain and muscle spasms. They gave me Ambien and it did help some. I wonder if it is his anxiety level that is keeping him awake. He could be afraid to go to sleep for fear he won’t wake up (just a thought). Do they have him on any antianxiety meds. I am still taking xanax day.
Well better go, keep in touch
Hi! If this happens again and she gets bad off again, she made need further evaluation. Keep a journal also! Perhaps a Rhuematologist can answer her weakness and fatigue if she falls into the same situation again. No nerve damage is a good sign. But Fibromyalgia can be dibilitating and also be a disease very hard to diagnose. Which is something she might have. It normally shows no nerve damage but the symptoms can mimic a Neurological problem when in fact it might not be a Neurological problem. Chronic fatigue syndrome is another disease that can have strange problems. Might not even be GBS or CIDP but mimics it! I too have Fibromyalgia and that is how I started but I have the CIDP too! I wish your wife well and hope the B-12 was the issue and nothing else! May she get well soon!
Hi! I am too rather new and have the CIDP instead of the Gillian Barre Syndrome. I really don’t know much about this disease but only a few things. But other’s in here will be around to help. Just want to welcome you here and the only advice I can give you is to Love your Brother and let him know just how much you care about him.
The others in here will be able to give you more info! I am so sorry to hear about your brother. That must have been horrible having that happen to him. Something as simple as a sore throat to turn out being life threatening is really scary! I will keep your brother in my prayers and hope he gets well soon!
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.
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.
Hi Brittianey my name is Brenda and I was diagnosed with gbs oct 12 2007 and it was upgraded to CIDP on may 5 2008, I understand about the getting sick again I have been told by my doctor that I will have a relapse at some time and it scares me to death but as like you I went into hospital and then lost all my body functions was tracked and in icu was lost 3 times and when I left the hospital on Jan 14 2008 was able to walk and talk again its been the fight of my life but you cant be scared because it is a gift that you have recieved and live life to the fullest and take everyday as that, you well get better and the pain well stop and the nightmares are your bodys way of remembering the trauma you went through but you made it and life is GOOD so keep dancing and laugh the best is yet to come
Thank you for the welcome back. Time is going by too fast these days. I just noticed marguerite’s passing. I’m stunned and sad.
How did you hurt your back? I hope you heal quickly. Congrats on Mike & Dan’s weddings.
Jen is about to enter her last year in middle school. She is growing up so fast. She’s on the honor roll. I’m so proud of her.
Cidp is hitting me pretty hard right now. Tahiti sounds like a great place right now.
Well, I have been having problems with CIDP and hope I can learn more and maybe contribute with what happening with me.
I would welcome anyone who has been gone to come back and share their stories on how they are doing.
Hi, Sonny! Happened upon your post on my first thread. I’m sorry to hear you aren’t progressing as well as you expected. Have you had any physical therapy since 2004? I started PT last week and my therapist said one of his clients (a man) comes in 2-3 times a year for a couple of weeks of PT and that guy had GBS 30 years ago! Wow! 30 years and still gets PT about 6 weeks out of the year. The therapy helps keep the man’s strength and endurance up and he feels better overall.
So, you might ask your doctor about something to help with the muscle pain and whether or not physical therapy would help increase your endurance and strength. Best wishes to you, Sonny!
😮 I became a member to this back in Oct. 2007. That was the first day I returned to work after getting GBS in May of 2007. I still have residuals, I guess, less severe than others maybe but still annoying. My facial muscles still aren’t how they used to be. It’s a little strange but, I can’t really smile like I used to. I can’t kiss, whistle or drink from a straw using my lips. Saying words that have the letter “b”, “m” and “p” are a little difficult to the point I have to slow down my normally fast talk when it comes to these. When I try to smile it looks like I’m in pain– LOL. My legs and arms aren’t bad. My legs below my knees are slightly numb- I’m more ticklish on my feet than I ever was- pedicures are a complete mental feat to try to get through without laughing and squirming uncontrollably.There’s no pain, physically. But I guess I shouldn’t complain, right? Nice to meet everyone!
Nope, I never did get a diagnosis. One dr. suspected GBS ( I did two rounds of IVIG and 2 PE’s with only temporary improvement), but all of the other neuro’s said no, this is psychological. The symptoms weren’t “typical”. I saw a counselor and a psychiatrist who both said, “No, this is not psychological” We took matters into our own hands. One of my good friends got me to do the MS/Swank diet and we saw great improvements!
It all clicked, on several occasions when I had a sudden flare up & ran to the ER, I had just drank whole milk….we then tried an elimination diet and found that not only dairy, but beef, pork, & eggs also flared up my symptoms (My current dr. tested me and stated I’m also allergic to wheat). There are also some environmental/chemical allergies. I still have to be tested for these. If I get a cold…like I did in early November, that severely debilitates me..yikes – even worse than my first “hit” with my mysterious condition.
One day my husband mentioned to mea dr. who specializes in allergies…I thought nothing of it, until my physical therapist later that day also mentioned his name. Finally, we found a dr. willing to listen to me & try to figure this all out. He actually was a physician for 18 years until traditional medicine wasn’t working for him 🙂 He found I had hormonal issues, (adrenal & progesterone), toxic amount of tin, digestive issues – candida, deficiencies, the list goes on…we were surprised.
We were noticing the supplements, especially Vit B12 injections, seem to be doing wonders 🙂
Anyway, nope…no solid diagnosis….I don’t know that I ever will have one, maybe time will tell….
I do not remember what brand I was on for ivigs. My neurologist always would have me premedicated with benadryl.
As for why I always wanted to make doctors angry,I think it was lack of control over my life. So I would do the opposite of what the doctors told me to do unless I knew this was reverse phycology(I know I spelled that wrong). Anyways the only doctor I ever really listened to was my neuro. He was the only doctor who did not annoy me.
Other than that I was a happy child. I had lots of friends in elementary and was “pretty normal”,I got a walker in 3rd grade because my balance was not that great-I did not use it in the classroom,only walking around the school. I guess when it comes to this disease,I have always been angry about it. I do not blame my parents for any of this. I am quite stubborn. My parents used to fight with me about wearing my braces,I hated those braces more than anything. I used to wear them in elemantary and hated them,but still wore them. I got into middle school and wanted to fit in and decided I was not going to wear them anymore. My parents fought with me to wear them and said if I did not my feet would get crooked. I did not believe them or the doctors. Ha-well now my feet are extremly crooked and is difficult to walk,I am considering geting my feet fixed in the near future.
I have never accepted this disease,I also think that is why I never listened to anyone. My mom and dad and the doctors told me to do exercises to keep my back from geting crooked. I did not want to,so I did not. I never really imanged I would get crooked. Well I did and had my spine fused at age 15. After the surgery and I was done with the pain meds I felt great. It was nice while it lasted..for like 2or3months I was pain free and then I started getting in pain again. Though I am not as crooked as I was before surgery,I am still pretty crooked. I was not supposed to get crooked after surgery.However,nothing ever works the way it should with me. I have also been really depressed lately because of this disease.Cidp sucks!!! I am sure you all know this!!! Anyways now I am on pain meds-Ultracet for my back.
So the only meds I am on right now are Ultracet and now Wellburtrin for deppression,it’s like my 5th one in 6months.
My parents raised me as normal,I had a normal life. My sisters and parents have always treated me normal,not as disabled or handicap,which is a wonderful thing. As a child the only time I did not feel normal was when I was in the hospital for ivigs and when I had to go to clinic. Other than that I never really ever saw myself as different. Only lately do I feel like I am different. I guess I just hate whenever I go anywhere I use my scotter and people love to stare.
My former neuro got me into telethon when I was five and have been on ever since. I love performing in front of the camera. I also took acting classes when I was younger and participated in plays. I love acting. I did a show two years ago worked with a local emmy award winner and loved working with everyone. I love performing,it is an escape from life and is also exciting. So that was what I loved doing as a child and still do. Find something that your child likes to do and sign them up for classes. My sisters always danced and I acted and did telethon so they had their day and I also had mine. Let them have something that they can do that they love and that does not matter if they have cidp:)
I think I never believed it would get this bad and making the doctors and other people in the medical profession angry was amusing to me and it also gave me control…I have only now started thinking about treatments for cidp in the last few months. I joined a group on facebook(kind of like myspace) for cidp. I thought it was great because for the first time I got to hear about other people who have this and that is also when I started comming on here. I would love to get on a treatment that would help me and also something that would make me stronger. When I was first diagnosed they thought the emg machine was broke and my doctor told my parents he could not believe how I was still walking. I was very weak however. He started me on prednosine and it was a huge difference. It worked really well and so did the ivigs,until my body became immune to it. I do keep thinking that maybe since I have not had Ivigs in me for 10 whole years that maybe it could work like it used to:) -minus all those bad side effects:( My mom was also telling me that maybe since I have not been on prednosine for 5 plus years maybe that too could work! So if I were on a low dose where it could help me but not make me gain weight.
I am thinking about going to the university of michigan since they have a neurology dept devoted to cidp,gbs,cmt. I want to go away to college,but have all my independance because I do not want an aid. I do alot of things but still need help with other things that my mom helps me with. I heard this one lady who had a serve case of cidp had a stem cell transplant and now I guess she is better:) I want there to be something that works,but I am afriad because what if I try something and nothing works for me. I want to get better!!! I do not think I ever believed I would have cidp for the rest of my life. I have been researching different types of medications and will have to ask when I get a new neuro.
To Emily’s Mom since you said you live in Mi,who does your daughter see for a neuro? How often does your daughter get ivigs? I think I used to go every 4-6weeks. I also was diagnosed when I was four. Are you registered with MDA? If so, does your daughter do the local telethon? Sorry if I ask too many questions. Until I came on this board I had never even heard of children having cidp,I thought I was the only one out there,lol. On facebook the people were either diagnosed in there late teens and up. I am glad I found this board and can talk with others who understand.
Anyways,I hope I could help the parents on here who have children with cidp. I think I may have rambled on too much.
[QUOTE=cyn926]First, I want to thank everyone for your suggestions and welcome. It is so nice to talk about this without people giving you that sympathy/confused look.
Second, you mean I’m not really crazy? You have all heard of this type of thing and maybe actually experienced it? Wow, I can’t tell you what a relief that is, I’ve been so isolated with it for so long, I’d about given up hope ever finding people who understood. Before they diagnosed my cervical herniations, I thought I was heading right back to where I had been. My hope was the surgery would fix everything, but all it did was fix my neck lol. The rest is obviously not related. I still think my spine took such a big hit from that paralysis I had, my discs running amock just seem like it’s part of the package.
They have checked my thyroid on and off, and it seems to be fine, though it is something to think about keeping an eye on. I’d never considered diabetes, though my sister had it, I probably should.
Other than the pain, I’m greatly concerned about my limbs falling asleep as they do. This isn’t just here and there, it’s anytime I try to lie on my side, either side…it’s also accompanied by the pain, be it in my legs or my arms and hands. You can imagine, then, how rare a good nights sleep is. Having to wake up and reawaken a dead limb takes awhile, by the time that happens, I can’t go back to sleep. Usually, I just toss and turn which stops the complete numbness, but sometimes it gets too far gone. I thought the leg thing was Restless Leg Syndrome, but with my muscles rippling like they do, and the pain that’s involved, I doubt that’s it.
And with the cold, my hands pain, well I would rather have the herniated discs than deal with that…it’s just brutal, a deep ache that won’t subside and you want to just scream, it’s that intense.
For awhile, I assumed it was Chronic Fatigue, but the paralysis with my mono just doesn’t cover that. Mono isn’t supposed to paralyze. If my ex husband says something is bad, you know it is…and this scared the heck out of him. Oh, one thing I didn’t mention was my vision was affected for quite some time, especially at night when I’d see doubles. My ex had to stop me from driving after dark for several years. For some (this is going to sound strange) reason when I was on a rather high dose of tranquilizers for the muscle spasms, my vision corrected itself. Doctor couldn’t figure it out either.
I now live in Western Michigan, about 50 miles north of Grand Rapids. Any referrals you can suggest would be awesome, though I don’t have the best insurance.
So, my question on the nerve tests is how do they even know what nerves to check? And what would the blood tests indicated? This time I am bringing a close friend to the doctors with me so he can confirm this is a real problem, maybe someone else that has seen it will get the doctor moving. I also have to get some pain management resolved, they yelled at me when I was eatin Tylenol like crazy, but don’t want to give you narcotics. I’ve never gotten “high” on them in my life, they just take away the pain to some extent. Some pain goes through no matter what, but it’s always relieved. We tried some prescription anti-inflammatories, but I had bleeding in my stomach from that; and steroids, but that made me so jittery I nearly hit the roof.
Sorry I’m so chatty, just hoping you guys can relate to some of the stuff I’m talking about and not think I’m just a baby or exaggerating. Do you deal with the “falling asleep” and RLS? One thing I do know, is there is some damage to my spinal cord from the herniation, and I have hyper reflexes, rather than the slower one people with post-GBS have. Tap my knee and it kicks straight out…even baffled the neurosurgeon.
Thank you all again, and any help you can give will be much appreciated. I will give the doc the list of tests…he’s usually pretty good if I tell him to test for something, he just gives up if nothing shows up. Again, thank you, and have a wonderful holiday weekend![/QUOTE]
I was reading your post. You mentioned you are in constant pain and need pain managment. I have cidp. I do not suffer from nerve pain that people with cidp/gbs get. I do however suffer from constant back pain because of the curvature in my spine. I had my spine fused when I was 15,could not get as straight as everyone thought because my doctor had to “go in blind”-the electrodes did not work. Anyways so because I still have a curvature and suffer from pain my orthopedic surgeon at the university of michigan refered me to the pain managment clinic there. I take ultracet for my pain. It some what works,I think I need a stronger dose. My doctor does not want me to up it-however when I see him in 2 weeks I will find out. Just wanted to let you know about ultracet,it may be easier to convince a doctor to give you this and could help with your pain. Ultracet is an a-typical opiod it has 37.5mg of tramadol(the pain killer part)and 325mg advil. Anyways it may be easier to get because it is not currently scheuled and so therefore is not a narcotic,so doctors do not have to worry about the dea..lol You may need to bring this up to doctors and if they tell you it is a narcotic,tell them to look it up on the offical dea site. Some people for some reason in the medical profession seem to think it is a narcotic..Anyways sorry to go on and on. I hope you can get your pain under control:)
Hi! I read your thread. Yes indeed you have some symptoms exactly what I had when I had GBS at 18 years of age. I am 40 now working as a RN case manager. When I had my GBS, it started with my eye(ptosis) then face, can’t smile, can’t blink, cant close my jaw then it went down to my respiratory muscles, can’t breath (vented for one month), then to my legs. From time to time I think that I am lucky to recover with few residuals such as my muscle atrophy on my fingers and my absent deep tendon reflexes. Few weeks ago(August 2007) I had flu-like syndrome which is unsual because it’s a summer flu like syndrome. During that week I had new onset of electric shock feeling on both of my legs and linear problem. I felt like my home was sinking and tilting. I still have those electric shock feeling on my legs as of today but with less intensity. I saw my neurologist and all he said is just the basic nursing care which I am fully aware about. I felt that I was just wasting my time to see my neurologist. I am not quite sure if there is anyone out there post GBS who had a flu like syndrome and experience linear problem and electric shock on both legs. I am not sure if I am developing a new onset of CIDP.
Just wanted to let you know that the only thing that helps me with my residuals that are very similar to yours is by taking 1 mg of klonopin, 1-3 times a day. Without it, i don’t think I could stand the stiffness. I also take cymbalta because the Lyrica didn’t work for me. Doctors don’t often like to prescribe klonopin but I have been on it since the beginning of my GBS in 2000. If I try to come off of it I am like the tin man . Maybe you could convince your doc to at least give you a trial run of it. xoxoxoxo Roxie
Hello All You Hot People….
It is a whole new meaning, isn’t it?!!! Good to read this post….we have long
winters in Minnesota and cool Springs, so when it begins to get humid and the
heat goes up, I too wilt. I find the days just go by and I am in some kind of fog. AC or not, the fog settles in.
Those neck ties you are talking about are at [url]www.QVC.com[/url] and called
Misty Mate Artic Cool Ties…good luck!!
Nice to be good company on hot foggy summer days.
Blessings Maureen Boz
Hey guys. Summer is a killer for me. That used to be my favorite time of year but now it seems like as soon as it hit’s 70 I can’t hardly breath and it just wipes me out. I hate it. I used to hate winter but now I can tolerate it better. I love the ocean and I hope if I ever have a chance to go back that I will be able to handle it. I think the breeze from the ocean will help me survive the heat. I know I don’t feel temperatures like other people do anymore but hot to them is like on fire to me…yuk.
The heat affects me anormously.Same thing happens. I get very weak, winded and extremely fatigue, I perspire like a Sring rain. I keep my house very cold at all times, includung winter. Needless to say my friends don’t get it. They don’t like visiting much because of the coolness. I wish it was 65 with a cool breeze year round. I think my residuals would really improve. Thanks for posting. xoxoxoxoox Roxie
I’m not sure what you mean by lp and ncv. The neurologist told me he ran tests for mitochondrial issues of names I don’t remember. He said he was considering GBS and CIDP but then after the EMG shifted to MF because that test “was in normal range.” It would seem to be that should be good news but he had nothing to offer in terms of treatment. And here I’ve been waiting for years for a diagnosis in order to have something offered me in terms of treatment. This is the source of my great disappointment. All he offered me was a 2nd opinion, which seems more about the diagnosis than any ameliorative treatment. It is devastating to me to be told I have no prospect of improvement because there is no treatment for me. It’s as in I should have done something years ago and had no way to know what that was then.
[QUOTE=angel2ndclass22699]Hi Lisa, Welcome to the Family. Were you tested for MG? what is GQ1B antibody test? Does your dr think you have cidp?[/QUOTE]
You mean “MG” = myasthenia gravis, rt? I’ve been tested for it several different ways — 2 different blood tests and a CT. I’ve also had more than 1 MRI and two different EMGs. Everything but the spinal tap, I guess. GQ1B is supposed to be an antibody that relates to CIDP and GBS. The doc mentioned both before the EMG results, but since those were “in normal range” he didn’t mention them again. He did mention Miller Fisher.
I don’t understand why the Dr doesn’t order IVIG, it could very well help you.
Tell him that many people get IVIG years later and it has helped them to a degree.[/QUOTE]
I don’t know either. Right now, he’s gotten me to consult someone else for another opinion. But what the heck does a diagnosis mean when I can’t “graduate” to something to treat whatever it is?
I’ll relay what you say. What I saw on the internet suggests Miller Fisher is a treatable form of GBS but no one says what happens if you may have had the trigger for a while.
I to am new. My onset was similar to yours 3/06. I hope you find the info and people as helpful in dealing with the many issue that seem to always come up as I have. The info that I have gainned in just the short time I have been visiting this site has been more than I was able to get from numerous docs and books over the course of the last year. No one seems to know as much as those who have been there!
The ept tests is evoked potential test(which is nerve responses)this was done early on before the pains really got going!I have had numerous bloods including thyroid all were negative.My neuro is letting the rheumotolgist take care of me for now.He wants to try me on iv steroids as he thinks things have gone on too long without them doing anything.I dont have trouble walking up stairs.I think I would like to have another nerve test as I am worse now than previous nerve test.This has all been going on for just over a year.I feel lucky that I havent got seriously ill or disabled so far.It just seems to be a very slow progression of pain pain pain.I have some days that are almost pain free and then just as you think it might all be going away it comes back.All the pains are not long lasting,but they are very random .
My 29 yr old son Nate has Axonal damage which is also know as AMSAN. After I read about it, I flat out asked his neurologist if he had that and he said yes.
It just means that the damage is much more than just the nerve coating but rather the nerve itself is damaged.
It means that the healing process will take longer than if just the coating was damaged. The nerves either heal or they grow new roots to by pass the damage. Its slow but it can happen completely.
Nate is 14 mos out and has gotten back his chest muscles, back muscles, arms and some of his hip and upper leg muscles back.
His lower legs and feet muscles are still not there yet and they’re still numb a lot.
His doc told us he would be ok anywhere from 6 mos to 2 yrs or longer. Everyone heals at a different rate.
Nate’s blood pressure was out the roof when he first got sick but it got better with the meds they gave him and he no longer needed meds for that after 3 mos.
One thing that is hopeful though is that GBS doesn’t affect your moms brain or mind. Even if she has facial paralysis, she knows pretty much what is going on and talking to her to tell her what his going on is a good thing.
It will help her to know.
When Nate was first really sick, I would tell him what I read and reassure him that he would get better. It really helped him a lot.
I have been addicted to IVIG for awhile now. When I first started it was done in a 4 hr window, and for 3 days. By the 3rd day I would start having headaches and high blood pressure. One day I had an allergic reaction to it, on the first day, first hour. Then it was changed to 8hrs. I couldn’t tell any difference, after 3 days I was still very sick. I changed Neuro’s last year, and now I get it 1 day every 2 weeks, over 4 hours… what a difference. I get a slight headache sometimes, not often, and no more problems with high blood pressure. The Hospital stay can be a real drag, hang in there. Hopefully if you continue getting it, you will be able to get it at home. I promise you, if you don’t lock the door, the nurse will infuse you in an hour and be gone. If I get it faster than 4 hours, the headaches start. Even at that, once in a while, I feel like I’m getting short of breath, and it goes away when they slow it. On 2 occasions my heart stopped, but I was in the ICU and it was a brand I hadn’t used before, because the hospital couldn’t get what I had been using. Plus I was really, really weak.
I know the signs now if I’m starting to have a reaction.
I feel like I can’t get a good breath, My ears start burning, and or my butt starts itching. go figure.
It takes awhile to get it figured out. So my guess is they figure they got ya for 24 hours, why hurry, the slower the better in most cases. Get ya an ipod and lose yourself in the music…or you can get some books on tape. I get mine from the library. Hang tough, you are not alone. Angels abound.
I was diagnosed after four days of goin to drs because of the severe pain in my hands and feet 11/5 /o5. was in hospital an rehab 2 & 1/2 months. my hands and feet still hurt I am currantly taking neurontinm and lyrika. most of the time it is bearable except when I overdo it.
My hands and feet are still numb. gratitude has got me through this whole experience. My 81 year old husband is my caregiver. HE’S GREAT1
A more interesting fact would be how many do you know who have GBS in your town, family, area. Since I have had GBS two years ago, I have found out about a little girl in my town who had it about the same time I did, an older gentleman in the next town, another lady in my town who had it 20 years ago, my 2nd cousin who lives in PA, I was also visited in the hospital by a woman who had GBS who live in the next town. That is five plus myself. What about you folks? Pretty unusual for a rare disease.
Congrats. Keep the morale high. Slowly he will definitely get better.
My case is also somewhat similar. I had too facial paralysis but I recovered due to elec. Stimulations. Now-a-days If I stand still for more than 5 minutes, the numbness starts in thighs. Both hands also get tired when I do some heavy work.
What he has to do, just to take rest in between and keep positive thinking.
My Fiance started his GBS journey just this summer. Luckily it ended up to be fairly mild, (only traveled to his thighs) and he’s now walking with a cane. We live down in Laveen (west end of south mountain).
I have yet to talk to people from the valley who have it. I work at Phx Children’s, and even here most people don’t know what it is. 🙂
I was in ICU two weeks. I was totally paralyzed but not vented. I could talk but the right side of my face was paralyzed. Rest is important, especially in ICU. I was not receiving therapy but just taken care of in ICU. I started receiving therapy once I was in long term care at another hospital. I did get a little range of motion from a PT when I was moved out of ICU. The key is not rushing therapy. I remember one of my doctors telling me that doing too much too soon before you are ready can cause GBS to flare up. I saw an OT once I was was in long-term care which was about 3 weeks after my onset. I found wearing hand grips and feet boots were very helpful. My hands curled terribly so I had my grips on all day and night. The hand grips were on several hours and off about one hour. I wore my feet boots at night mostly and on and off during the day. You are very tired when you have GBS. OT did basic things first. I also had a speech therapist. It takes time just to move and progress. I remember thinking it was hard work and would I ever be able to dress myself again. I loved my OT’s and PT’s. I hated the therapy because it was a lot of work. I never thought I would be able to dress myself. It was work. The goal they told me was to make me self-sufficient. Do not do anything for the patient but have patience as you wait and work with him. Encourage but don’t discourage. Positive words. Invoke confidence in the patient that they can do it and you won’t be far away if they need you, especially when you begin to leave them alone to do things you know they can do but they think they can’t like dressing and eating.
Glad you want to help GBS patients!
hai..sam………i am 38 years old and 79kgs,5’7″ height…..iwas diagnised for gbs on 5th of june’06 at that time i was give IVIG for 5 days and when i came out my weight was redused from 78 to73 kgs as i was only on liquid diet may be. i was also not able to stand at that time, i was taken home were i was treated by a PT daily for one month and gained back my original weight because of the regular diet. I was able to walk with awalker after three days of my PT course and was able to walk with support of two persons the next day and was on my own after a week. The only thing i realise at that time was the will power which makes us to do all the things and the goo diet and the PT of course…………. so pls dont bother about when to start walking…….first take goos diet……have PT………have ur confidence level high.which motivates and give ur sis themost moral support of ur family and friends…………byeee and i pray for ur sis to recove soonnnnn.
Hi, Jen is almost 11 now and doing well. I’m fighting thru CIDP right now. Just hoping it gets better soon.
How is everyone else?
Hello everyone!!! It’s nice to see so many familiar names again. I hope I can catch up with everyone.
I can relate to some of what you said. I am semi-dependent on a wheelchair now (I’ve gotten stronger) and the one who I thought would stick by me no matter what, just disappeared when I could no longer do what we used to do. Now, the one who I thought would not be there, has shown she’s my best friend.