I doubt that your doctor really thinks that there is something else going on, & what does he mean by stating that you were the worst case he had ever seen? I wonder sometimes when these neuros are always telling people that they are the worst cases; when I was staying at Mayo, they kept telling me that I was the worst case of CIDP that they had ever seen. At the same time, I had a roommate with CIDP who was just as bad as I was, go figure. It is also time that they quit telling people that 85% of people with GBS make a complete recovery, as the latest newsletter states very clearly that even the best cases usually end up suffering from fatigue.

I am assuming that you were completely paralyzed & on a vent? Not all that unusual for GBS really, actually a pretty classic case of AIDP. Right now one of my classmates is down in Duluth, MN completely paralyzed & on a vent, they are telling her she should make a good recovery. I sure hope they are right as they have the entire family convinced of it. I have another classmate who had the same thing & did recover in about 6 months, a very good recovery. But having spent the past 8years on the forum, I can tell you that there are many out there who had GBS & were left with significant residuals.

My neuro said it would take up to 2 years for me to recover and its the 2 year mark this august 12 . Ive still got a long way to go and im getting stressed out because i have an appt with neuro next month and i know he will tell me that this is as good as it gets for me. But so many people on this forum still improve many years later after 2 years. Can anyone tell me when we have to accept our residuals as being permanent,? 98%of the time im positive and can laugh at myself but im anxious about my appt. Thanks for letting me vent.:D

I was diag with gbs 12 aug 08 I spent a month in hospital and started rehab 2 weeks after 5 days of ivig. At that stage i was in a wheelchair . At rehab lying on my back and trying to move my leg an inch off the floor was a mammoth effort and took every bit of energy i had. Im sure everyone here knows about the exhaustion that is with you 24/7 .Anyway now i use one crutch when out and about ,i can walk without it but my balance is still a problem, no reflexes in ankles. and i trip easily. The fatigue is still there but not as severe,memory is still a problem, trouble swallowing at times ,muscle cramps ,static in my vision,tremors in my hands mostly when tired or stressed.trid to run but cant seem to launch myself of the ground (ha ha ) i do 2 hours rehab a day and i think that plays a huge part in your recovery.i used to go for an hour walk every morning before gbs so my goal is to do that in the future. its important not to give up and to keep believing you will get stronger. gbs knocked me flat but in some ways im stronger for it . And you gotta keep your sense of humour .Keep positive everyone .

I sympathize with you, although I know that is not why you came here. I know people in my area who had GBS & seemed to make a complete recovery, but still suffer debilitating fatigue. I do think that most of those who suffer GBS do make a full recovery, but many are left with residuals. I am 8 years out now & am left with total foot drop so I need AFOs on both feet & use a wheelchair when I need to do long distances (zoos, amusement parks, craft shows.) My hands are still damaged, although I can do most things I need to do with them. Could I ever return to my previous job as a teacher? I could not see myself working in any capacity, it is not the numbness below the knees, my damage to my hands, or anything else people see; it is the FATIGUE, a fatigue so difficult to comprehend that it is impossible to explain it to anyone other than many on this forum. I need 10-12 hours of sleep a night, most days I feel tired all day, I don’t think I ever feel “normal.” Keep working with a doctor who is understanding, & keep on fighting for that diability. I wish you the best of luck…

Tom,
I, too, just returned to the forum after a couple of years. I contacted GBS in 2001, and I have residuals of numbness and pain from the knees down, and some in both arms. I was actually hours from being put on a ventilator. I was paralyzed from the neck down, and I was in the hospital 9 weeks. I choose not to take medication for the residuals. The discomfort never leaves, but sometimes is worse than the day before. I, too, believe that residuals can get worse with fatigue and simply overdoing things. I probably have a 90% recovery which is wonderful, but I am still very cautious . The nurse who administered the plasma pheresis(she works only with that) reminded me that stress is a huge factor in GBS recovery, and I personally feel I have more problems when that is a major stress factor in my life along with overdoing things. Awareness is so important with recovery and every day life. Good luck! elayne

I had GBS in 1963 when I was 24 years old. For at least 25 years I thought I had recovered completely and that everyone else did, too. I ran in several short, fun foot races, learned how to wind surf, and did several very tiring vacations. The I began to experience numbness in my feet, and ankles, and fatigue (which came earlier but I didn’t realize it was connected to GBS). Now, 46 years later, I have all of this and more. As you siad, it isn’t that you can’t deal with it. In fact, once I knew that what was going on was likely related to GBS it removed, for me, the worry about it being something else – or another bout of GBS. Like you I was close to being on a ventilator, except that in 1963, it would have been an iron lung, which sat in my hospital room like a threat – “if you don’t behave, you get to go in the respirator.” Thankfully, I never had to use it.

Now, at age 70, I get fatigued quickly with any physical activity, more quickly yet, if I get warm at the same time. I have the most energy in the morning, and wear down as the day progresses. Whenever possible, I try to have only one outing in a day; I rest for 30 minutes every day, to straighten my back and just relax. I have three different back problems so I use a wheelchair to go anywhere where I have to walk far or stand for very long. For shorter trips – such as into and out of one store – I use a walker and, in summer I walk every day for the exercise. I was up to 14 houses and back when winter arrived.

My husband does all the cooking and shopping as I find it wears me out, especially if I have to stand at the stove to prepare something. I think the up-side of all this is the ability we gain to adapt to changes in our physical abilities and limitations. I also think that we learn to appreciate things we can do that others take for granted. I enjoy every day and can hardly wait to get out of bed – which I do, usually by 5:30 in the morning. Today I slept in until 5:50 and felt like I had missed something more than 20 minutes on the clock.

We have a support group here that has been meeting for almost 20 years. I would say that what you describe is very common among the members of our group. All the best in the future and for the coming new year.

Maureen

I have had GBS three times. The last being 2002. I still ache all the time and get tired easily. I just recently was taken to a Christian rock concert where I had to walk down a lot of steps to our seats and then walk back up. I was hanging on the railing with every step. Two days later my legs are still weak and achy. I just turned 69 so age has something to do with it too. I am okay walking but going up and down steps is a hard thing. I need to hold onto a railing or I lose my balance.

hi reading your post ican add my case.. had miller fisher varient 10 years ago and have had recurrent problems about once as year , doctor has no idea but symptoms, can be different but seem so simiolar to gbs ,, numb foot, slightly numb hands , feel and look tired suddenly. twitching also when asleep , feel like shaking but not actually visible , also now headaches for a month ,also if i move my head i get dizzyness doctor says might be an aer infection yeah right i dont think it can be triggered it seems not when things are good for me but seems following say happy working at home but very busy ,bit of flu or some lousy chest virus , i take very small amitripyline dose.. do you take any drugs at flare ups do they work ??? anna

Well Folks, the twitching and cramping resids lasted into my third year of recovery, but have pretty much disappeared now. My resids are weakness, lack of flexibility and numbness, all in my arms/wrists/hands, my neck and my lower jaw. EMG’s show almost no conductivity at the top of my neck/base of my skull, but other areas in arms and legs about 50%.
Neurontin/Gabapentin is the drug of choice for GBSers. It deals with the nerve pain like nothing else can. I take 1,200 mg. 4 X a day, and have for the past 3 years. There is a disputed side effect concerning short-term memory loss, which my wife also blames on the fact that I’m getting old.:D

Hi Roxie, i have been having really painful contractions in the legs, thighs, calves, fingers sometimes in the arms as well. I also experience that rubber band feeling around the knee as well and tremors in my hands especially the right.

GBS-Onset 6/08/2005

I actually had a severe case of CIDP over 5 years ago in 2002; but it was so bad I was dx with GBS for the first 6 weeks. But since it was arrested by chemo in 2003 & I have not had any treatments since then I feel more like a person who had GBS then CIDP.
Residuals: numbness in lower legs, feet especially numb. No movement in my ankles or my feet, thus total foot drop which means I must wear AFOs all the time. I also have no balance so I need a cane to walk. No more running, bending down, limited walking just as I need to function. Weakness of my hips & knees as well.
Fatigue: I must sleep at least 10 hours a night & usually must take a nap as well during the late afternoon to feel halfway normal.
Hands: my hands recovered about 75%, but I still have numbness on the palm side & theyaare weak overall. Virtually no fine motor skills.
Heat: I don’t handle heat well, & have to be careful not to get overheated, as it zaps my strength. I get overheated very easily now.
Muscle twitching: particularly at night, when I am trying to rest.

But I must say that I am happy to be where I am now, as my neuro never believed I would walk again, nor did he think I would get any use of my hands back. I was so bad for 2 1/2 years that I am content to be able to do what I do, & I live a pretty full & normal life.

I actually had a severe case of CIDP over 5 years ago in 2002; but it was so bad I was dx with GBS for the first 6 weeks. But since it was arrested by chemo in 2003 & I have not had any treatments since then I feel more like a person who had GBS then CIDP.
Residuals: numbness in lower legs, feet especially numb. No movement in my ankles or my feet, thus total foot drop which means I must wear AFOs all the time. I also have no balance so I need a cane to walk. No more running, bending down, limited walking just as I need to function. Weakness of my hips & knees as well.
Fatigue: I must sleep at least 10 hours a night & usually must take a nap as well during the late afternoon to feel halfway normal.
Hands: my hands recovered about 75%, but I still have numbness on the palm side & theya are weak overall.
Heat: I don’t handle heat well, & have to be careful not to get overheated, as it zaps my strength.
Muscle twitching: particularly at night, when I am trying to rest.

But I must say that I am happy to be where I am now, as my neuro never believed I would walk again, nor did he think I would get any use of my hands back. I was so bad for 2 1/2 years that I am content to be able to do what I do, & live a pretty full & normal life.

Hi Roxie:
I am 15 months in and still have a lot of residuals effects. I have made a lot of progress, but still walk funny and it bothers me most when I am in a store or on pavement. If I walk slowly, I can do okay but tire our really fast. My worse is my tremble in the hands and fingers. At times if I have exercised or done some work, it is so bad I can’t type. No control over the little fingers on both hands.
The lyrica works for me with the foot pain, if I stay ahead of the cruve. I take 100mg in the morning,150 at noon and 100 at night. It kind of numbs me out and makes me sleepy, but my feet do not hurt so bad. My worse pain is in my left foot and ankle. My worse residual is the fatigue factor. I need to lay down in the afternoon for an hour every day or I will suffer more. I also try to budget my energy and do activity in the mornings. I am blessed to be retired and do not have to work a job as many others do, so I really feel sorry for them knowing the problems we have to deal with. I hope this helps someone and thanks for your question.

I agree that most doctores don’t realize how many residuals we face. I too get the numbness, tingles weakness on one side, mainly right, and then when I’m really run down I can’t even swallow, and slur my words light a drunkard If it weren’t for my konopin and cymbalta I believe i would still be house bound. It is not in our imagination. xoxoxoxox Roxie

[FONT=”Comic Sans MS”][/FONT] At age 68, I am 44 years post GBS but I would say that, for at least 20 years, I did not experience any symptoms severe enough to cause me to even wonder if there was a problem. There was a lot less information available then so even when I inquired through the Foundation in 1992, I was told there was “no such thing.” My actual question was if there was a “post GB syndrome” as there is a post-polio syndrome. Now in GBS it’s called “residuals.”

With 15 more years to my life and learning, I am very careful about not overdoing it and about not going out where there are crowds in the winter, especially if it is a bad flu and cold winter. I use a manual wheelchair when going out to malls, a park or anywhere where I have to stand for a while or walk very far. Whether this is connected to GBS in any way I have no idea. It is caused by the fact that I have three separate back problems: degenerative disc disease, osteoarthritis and two fractures, apparently not from osteoporosis. I have several pinched nerves, that can be very painful when they act up, and neurological pain, in my feet in particular. My feet and legs are numb, my hands are very weak and I tire easily. I get up at 5:30 a.m., lie down for half an hour around 12:30, and go to bed at 9. This seems to work well for me. The only medication I take, other than a blood pressure pill, is Ibuprofen – one, 3 times a day, unless the pinched nerves are bad, in which case I double the dosage.

On the positive side, I learned how to wind surf at age 50, something I wouldn’t have tried if I knew then what I know now. I make all my own greeting cards, do scrapbooking, “exercise” every day, keeping in mind my limitations and energy levels, and do a lot of volunteer work. I couldn’t imagine my life being any better than it is right now! I am very grateful for the lessons of this experience and for the many opportunities I have to had to talk to and learn from others in the same boat. I wouldn’t change anything.

MDK

Hi,
I too have had great difficulty in figuring out if my ten year olds symptoms are residual aidp symptoms or cidp. My son was dx in Oct. with gbs, he recvd. a five day course of ivig. His strength held without any additional meds. for 51/2 months (February). In January, Kevin joined a basketball league that had intense practice, maintained school activity, played with his friends etc. By the second week of Feb. he started to say he had the jelloie, wobbley feeling again. We went to the neuro., he said lets try taking it easy and see what happens. We did, he still was tired and fatigued, so the Dr. said perhaps it is cidp, and he set up an additional ivig by March 12. Well, on 3/8,3/9,3/10, Kevin all of a sudden started playiong like a mad man again, basketball,baseball, trampoline, the whole weekend, 6-8hrs. straight. I wanted to cancel the ivig. The Dr. felt that we should just continue with the plans. We did. Upon our admittance, the Dr. ordered an another spinal tap just to be sure that the protein level was in fact elevated again as in our initial dx. Unfortunately, after four tries, they were not able to get a puncture, so we just stopped and proceeded with the ivig. I do not know why it matters to me, but for some reason, I kept hoping it would be aidp. My doctor, as well as a couple of the moms on this sight have finally convinced me that since the ivig is working, just go with it. So, what I am saying (just an uneducated mom opinion, to be taken very lightly) maybe you could ask your Dr. for a repeat spinal to see if there is an increased protein level, if there is , then it could be cidp and ivig would help. If there is not it is aidp, however, there is not always an elevated protein. The way I now see it is why wait , try to make sure. If you wait thinking it is residuals and in fact it was cidp, more damage occurs. Although we were not able to get a spinal to confirm the cidp dx. the ivig has made a difference, so I guess I have my answer. You mentioned new sensations and symptoms, this would be a red flag to me. at the least, I would go for a check up. I know some of what I say sounds confusing, but honestly, gbs is confusing, no one person really presents the same, or follows the textbooks exactly. In our experience, we have had to figure things out by trial and error and by the help of others from this website. Good luck to you, I really do understand your frustration. Dawn 😮

You asked how can people with these types of residuals keep going on? Easy, one really has no choice. I am almost 5 years out, having residuals a lot worse than you do, but it is the fatigue that I hate the most. I am always having to explain to my family as well that I am just too tired to do things.

Having siad that, it seems that this type of fatigue comes with most autoimmune illnesses, I don’t really understand why. But it does help to remember all of the illnesses that are a lot worse than this one is. No a whole lot of consolation really, but we have no choice now, do we?

yes. they are definitely residuals. i’m 5 years post gbs and still have all of what you mentioned. getting depressed and worried is also part of it. that’s why we’re here. we’ve all been through it and know what’s to be expected as far as residuals go. it’s hard to deal with these issues sometimes, but please always remember, you’re not alone.
xoxoxoxo
deb