So my sister (35) got sick with GBS over a year ago, she has improved to the point where she can be put unto a wheel chair. She has shown very little improvement, she has been going to a general/family doctor which I suspect is a mistake. I have a few questions.

1. How do I find someone qualified to treat her? She lives in Redding California.

2. Any physical therapy can she do right now?

3. The General Doctor did a reflex test to the knee and she failed and said she wouldn't walk again, how accurate is that?

I don't know what your sister's condition is, but they started me on physical therapy when I could hardly move myself in the hospital bed, and it felt like torture. But it helped, and I eventually got better.

The doctors don't always know what will happen. The doctor told my wife I would be confined to a wheelchair, following a comprehensive nerve reaction test with electric impulses. He got no reaction at all, so it looked pretty bad. I still have no reaction to the classis "knee jerk" reaction, but I can get around pretty well. (see my video of me riding my unicycle.) (But I still have a fair amount of residual nerve damage pain, and my legs hurt all the time.)

Have patience, sometimes it takes a long time, like years. But if your sister has been improving, there is no reason she should not continue to do so.

Good luck!

Hi Lance B. My son just showed me your response to his post on this forum. My son spent a great deal of time talking to his sister today. I am so lucky to have such wonderful children because my son is spending a great deal of time researching his sister's condition. I thank you sooooooooooo much for your words of hope. Something that is so desperately needed in my daughter's life at this time. My son and I have always felt that no doctor can possibly predict an outcome especially when it comes to issues of the will of the human heart surrounded by those that love. I was so delighted to see you riding your unicycle. Amazing! I applaud the courage you've shown and thank you again for taking the time to share your ongoing victory. :):):) Karin M.


Hang in there! I hit my two year mark this month and I can walk short distances, but still can't run, skip, or jump. Here's my advice to your sister:

Find as many Nuerologists in the area as you can. Call each one and ask how many GBS patients they see. Make an appt with the one that has the most experience with GBS. Stay under the care of a Nuerologist with experience with GBS. And see your family doctor as a secondary doctor.

Save your hospital records and share them with your Neurologist. Keep notes on your daily health status and progress. Share with the Nuerologist, esp the Nerve Conduction Tests. When you write it down, you'll see the tiny tiny progress you've made without you realizing it.

Do a litte bit of very mild excercise every day - even if it's two minutes three times a day. Eventually increase the time.

Watch out for depression. Talk to as many friends and family. Try to stay positive and do things to make you happy. Learn how much activity you can do before the pain kicks in. I end up staying in bed the day after I overdo it.

I think my condition is as good as it's going to get, but it's a heck of a lot better than two years ago when I was sick.

Join this support group and hang in there! Wishing you well.


Hi, I'm sorry to hear of your sister's slow progress but unfortunately sometimes it seems to be the case. This absolutely does not mean that she will not recover. She should start doing physio and range of motion exercises as soon as possible to help rebuild muscle strength and keep joints flexible. I was doing this the whole time that I was confined to a bed. Mainly things like trying to lift my leg against gravity, trying to bend and raise my knees, pelvic lifts and arm lifts. Even if the muscle is too weak to do much just activating it on a regular basis can help.

Also, she should definitely try and get an appointment with a neurologist, ideally a neuromuscular specialist. A general doctor is simply not qualified to deal with her.

Finally, lack of reflexes is by no means sign that she will not walk again! She needs to have a nerve conductivity assay to determine the severity of the demyelination and if there is any axonal damage. I had complete lack of reflexes at the beginning of my onset and I can run and jump now, 14 months on. I wish your sister and your family all the best and I hope things start to improve soon!

My heart breaks, but after one year do not give up hope. For me I am in year 8 and i REFUSE to give up hope. I suspect that following the virus of GBS I was hit with ME (Chronic Fatigue Syndrome) but one thing I have learned is that I have had to do my own mediucal research; I've spent thousands or hours researchingl reading and then walking that tightrope with medical people yto give them information I have- you've heard that joke: What's the difference between a doctor and God? God doesn;t think he's a doctor- to a level it is very very true.

You need to get her to a neuromuscular specialist but every single doctor will have to be educated and that means by you. So haul out the New England Journal of Medicine, gert to the library of your nearest medical school, troll (buy used- that's what I did) and start reading everything you can about this condition. In regard to making her more well, the MOST important element is not to rush it. Any axon or muscule that is dammaged as the myelin sheath are repariing themselves is permanent. At the same time, atrophy is dangerous, so gentle masssage and slow, easy manipulation of the fingers and knees is very important. One of the reasons I failed to thrive is the old PT philosophy "No pain, No gain." This is true in most cases but with GBS it is terribly destructive and when they put me on a stationary bicycle and pushed me so hard, I permanentlyu dammaged three muscles and two axons in my back and thery let me know it every single day. Sooth her pain and the most important form of therapy is hydro-therapy.

She needs to spend time in both jacuzzi tubs and swiming pools. Water Therapy is very critical and, in fact, if you could get her into a pool every single day, she could naturally work the muscles she needs.

Educate her as well. There are books written by people who've had this illness and perhaps they willl help her to know she is not alone. Most of them, however, are whiny about care, looking to blame and then, ultra religious. Even "No Laughing Matter" by Joseph Heller was of little help to the patient, however YOU must read it, because every other chapoter is written by Mr Heller's friend who was his caregiver and the damage that can be done to the caregiver is horrific if unchecked. My own book- not yet completed- spends a lot of time talking about this very important element. It is very likely that President F.D. R. was afflicted by GBS and not Polio. These small things help.

Most patients spend a year I N the hospital. I was rushed out, despite the good care I had. She will need a pain specialist because she will require a "liscenced dealer" to write narcotic 'scripts each month. Perhaps she will be lucky and will not require narcotics in her pain management, but she will be rare if that is the case. I will save medications and pain management for later and stick to your questions.

so she needs to be seen by a doctor once every 30 days for prescriptions and to monitor her vitals, her day to day activities and progress. Do not waste time having her declared disabled. I waited far too long, not thinking that I could reverse it if made well again and I used my life savings in five yars of waiting. Apply for every public thing you can. Begin with Social Services. She needs to have people and specialists come into the home every single day.

I suspect she suffers from chronic fatigue. in case she has not explained to you how this works with GBS patients, consider a gas tank in a car. Once the tank is empty the car ceases to function. Yes, you can play the stereo off the battery but eventually the battery will die. This is the same as with her body. The moment her body says, "I am exhausted, or I am done" she MUSTY get to sleep. Empty means EMPTY. to push beyond that is to damage muscles and axons further. in the meantime, she will possibly be trapped in bed for long periods of time. Make sure that she always has something to druink beside her, that therer is always some kind of food and that someone is making sure she gets her medications as needed. Keep her comp[any. books, DVD's, radio. After my long stint trapped inside my body and head in the hospital I've required a fan blowing on me at night (likely as a result of trauma from the respirator), a light styronger than a night light, and a DVD of familiar sitcoms that loops constantly. Silence, or CNN can affect the dreams and I guarantee you that her dreams have changed substantially both in regard to vibrancy and to subject matter.

She may very well walk again. A relfelx test only? Bull! Even with an ECG they canp;t say she won;t walk again. I went from total paralysis from the nose down, that6 included the loss of speach, and now I am able to ambulate with one cane. don;t believe it. the doctors just DON'T KNOW. And when they say she will never walk again, smile and take FULL adv antage of every single thing that offers, but don;t give up. She'll walk. Be careful of balance. Ther trip fr4om my bed to my cahir in the parlor is lined with pianos, bookshelves, tabl;es and walls so that should I lose balance I can fall against sometyhing or use it to guide me. It has been over two years since I fell.

So quick recap: Unless you're meeting with Dr Joel Steinberg (and I highly reccomend his book written with, I think, Gaillbreth -two doctors who both had GBS) there is no such thing as an "appropriate doctor." That would be ANY medical personel who is willing to respect you enough to listen to you. I began my illness in the best medical city in the country- Boston, yet in the podunk Finger Lakes of NY State I have found an OD named Ralph Ortiz who is, without questioln the best doctor yet. Do not forget that a therapist is just as important for BOTH OF YOU. Trial and error.

Physical Therapy, I've covered, but again DO NOT PUSH. If she says she is tired then STOP. Hydro therapy. Avoid muscle atrophy with gentle massage ande manipulation of digits, the ankles, knees. (My toes used to feel fantastic when someone would grab them and pull like hell as they squeeze4d, but that's just me.) Steinbergs book on GBS discusses appropriate PT in detail.

Any doctor who tells you ANYTHING definitive is full of shinola, because there is virtuallhy not enough research done to know for certain.

I would stack my wotrds and experiernce beside any medical doctor anywhere.

If I can help more, please hit me up.

Dave Seaman


I had Guillion Bare 25 years ago. I was inSpokane, Wa. My Neorologist was FANTASTIC! I was paralyzed from the neck down. I guess it took a full year to recover. It's been almost 30 years and I still have alot of nerve pain from it. I remember the Dr.'s telling me I may never walk again too.

When you say "recover" what do you mean? That sentence gave me the impression that you returned to your former self. Yet you went on to say that you still have a grat deal of neurolgia.

I found three GBS research projects for post-GBS patients. ONe at Johns Hopkins, on in Stockholm and one in Sweeden. I wrote a letter asking their patients to contact me in five languages. Johns Hopkins would not even send my letter on to their subjects as it was, they said, a violation of HIPPA, but through Stockholm and Sydney I got 33 email replys of the 127 patients between the two studies. I corresponded with them all, asking the same questions at first but then adjusting my questions based on what they said. I did not treat this as a graduate dissertation- it was for me only. I never published, I didn;t appropriately cite, but I learned that virtually every single patient of GBS experienced the same symptoms of the actual illness in varying degreesfrom death to those who never required life support and merely lost leg function. However, not one single patient had the same story of recovery as any other. The only consistency I could find was inconsistency both in regard to an individuals dayt to day condition and to the way that patients compare to each other.

I strongly repeat what I said above: easy gentle myuscle manipulation and range of motion, but pain is an indication of muscle or axon damage which will never repair. Hydro-therapy is the best thing. Listen to your body. Take advantage of every opportunity you can, from Solcial Services and dissability to media coverage.

The biggest sadness for me is that I had to stop working. I could easily deal with the pain- we've become old friends, but the fatigue is so strong, unpredictable and injurous that there is no way I could work. I had a highly succesful career in music and theatre- the kind of work that is all about collaboration. And now I am alone. I occasionally write something- I'm currently working on a string quartet that was commissioned and a Christmas song where I am supplying only the myusic- the first time ever I've not written my own lyrics, but these [projects can sit for days and days untouched because I am trapped in bed from exhaustion or because the one day of the week that I am "up" I must spend on paying bills, important correspondance, my children- both of whom are in their early 20's- and details with doctors, pharmacists and insurance companies.

What this woman needs from as mamny of us as possible, is how we are doing NOW. It takes a full two years for the myelin sheath to repair. So she needs to know how we function after that.

She also needs to know one other thing and for this i can 0only speak for myself: Through therapy, support from groups like this one and family, I've come to a ppoint where on an emotional level I am more well than I've ever been in my life.

She and her family aren;t aware, but they have a great deal to be thankful for. I 'll gladly spoon feed them, but the fact that this impassioned plea came from her brother indicates a rare love that many people don;t have. that's a great place to start her list.

Dave Seaman

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What a fantastic, well thought out reply. Helpful for all of us to hear, thank you!

I guess what I meant was... I have recovered as far as walking and being able do do every daily activity I used to do, but I have nerve pain, tingling in all parts of my body, and I too tire super easy. I am very greatful that all my range of motion and and being able to do all my gym workouts and all that returned. the other, as far as pain and all the numbness and tingling, i have realized I will have to live w/ that for the rest of my life.

Everyone talks about "tiring easily" or another woman spoke of how, when she gets home from work each day, she "can barely make it up the steps."

My fatigue is so very much worse than that that I've yet to meet someone who makes me feel aqs though I am not the only one. The act of washiong my hair will kill all of my daily energy. I am out of bed during the BEST of times only every pother day. The worst (shall I say, the record) was a 17 day stretch last summer when I was in bed except to struggle to the toilet. I've even considered that I may have Myalgic Enchepalomyolitis on top of risidual GBS effects. (I was diagnosed with PTSD in 1998 and Fibro Myalgia in 2000).

Were it not for this completely debilitating exhaustion I would not be dissabled; I could still be working. Losing the abilty to work is, fort me, the most devestating loss of this entire disease.


Regarding the reflexes, it is my understanding that most GBS survivors do not ever regain the reflexes. My neuro was very pleased when he saw some reflex back after six months. I don't know if this alone would be reason for stating permanent disability. I do believe you have significant challenges, but keep at it. It is a very slow process.