Life after GBS

My first symptoms occurred on May 13, 2014. After 66 days in the hospital and continual rehab, I still have numb feet and weakness in my hands, but can walk with AFO's and a cane, along with cognitive issues. I realize many inflicted with this syndrome have worst continual symptoms, but as a competitive cyclist and health coach this has been devastating. Not only do I have myelin sheath damage, but axonal damage as well. This of coarse takes much longer to repair, if ever. I have been told to expect repair rates at 1mm/day, but the nerve repair may never end up right.

I was wondering how others with axonal damage are doing and do they end up with full recovery. To all of those out there with this nasty disease my heart goes out to you along with my prayers.

Jaguar JOHN

John I had GBS 2 1/2 yrs ago. I still have some numbness in my feet, get fatigued easily, Cognitive deficit with 30 % memory loss, hearing loss and blood pressure issues. But, I can now wit everyday. Even though I have had to cut my hours some. Things are much better. There is light at the end of the tunnel. And, I am a nurse practitioner, so it was very hard for me to accept this but I feel I am lucky. Things could have been much worse. I don’t use a cane anymore.

Hi John!

My first symptoms occured the day after Memorial day in May 2012. I finally got diagnosed on June 04,2012 after several visits to 2 ER's family doctors and my Internal Med Dr. All of them said they did not know what was wrong with me. One said it was just neuropathy. Finally I got to see a Neurologist on June 4th who knew within minutes of seeing me (or suspected) what was wrong. Had me admitted immediately to the hospital and test were begun. The MRI and Spinal Tap showed that I did have GBS. They immediately then began the IVIG transfusions for 5 days. Then thought I still needed Plasma Pheresis and had to transfer me to another hospital and change Neurologists. After his initial exam, he determined that the IVIG was beginning to work and that I did not need the plasma pheresis. They kept me for observation and minimal theraphy for a week then sent me to a Nursing Home/Rehab facility (it was hell) because they did not think I was up to normal theraphy yet. I was there 7 weeks. Long story short, I ended up having to have a colostomy due to recto/vaginal problems. (This had nothing to do with the GBS, but hubby still thinks it was fault of the Nursing Home). Back to hospital for the Colostomy then moved to short term rehab which was wonderful. Only problem was it was short term (18 days)and I was not ready to go home at that point so I was transferred to Memphis Jewish Home & Rehab. It was wonderful after I came to terms with it and they really helped me. After 4 1/2 mos all together, I finally made it back home in a wheel chair and a walker. I continued out-patient therapy for 4 more mos. and then went on the fitness program which I am still doing. I can go as often as I want and at any time I choose. Guess I will have to do this forever. I can now walk like a duck or a drunk here in my home. I still have numbness in lower legs and feet, but I am so much better than I was, Praise God. I still use my walker at night to go to the bathroom and I use my cane when I go out because my balance is not good. I am so afraid of falling and breaking something. I have fallen once and that was enough, but I only got bruised, scratches and soreness. Thank goodness, I am 72 and I don't have to worry about going to work. However, just FYI, I play the piano every Sunday in church, produce all the church bulletins, I am my husbands unpaid secretary (He is the Pastor) and I do the Children's Sermon. Oh yess, I can drive again! So you see I am still quite busy and productive. The main thing is to keep a positive attitude. I was determined that this was not going to get me. It and the colostomy have changed my life somewhat, but I still have a life! You hang in there like I did and do all the therapist ask of you and even more if possible. My last therapist even put me in some of her hiking boots to get me back up on my feet and!. It was a site, but whatever it takes, do it. Wishing you all the best in the future. Let me know if I can be of any further help to you.

Hugs & Blessings!


When you mentioned weakness in the feet - well that is ringing a bell. I had GBS over 20 years ago, but now that I am 68, I find that my legs have very little strength when I am attempting to get into an ATV or truck. I was just thinking that was old age - and probably it is for the most part. Now, I am thinking the GBS may be part of the weakness. I can walk just fine - and dance. So, this inconvenience is minor. I hope things work out well for you !!


I had GBS when I was 31 and now am 53. At the time I was a very active athlete. take small steps each day until you get tired. It’s a slow process, but it gets better. today I only have residuals in my feet which are annoying, but not very painful. I run and workout 3 to 4 times a week. The mental part was the hardest for me being a competitive athlete. Stay positive, it will get better.


How did you get the testing on the nerve cells themselves? Like the myalin sheaths.. i have severe burning, numbness, and tingling and would like to have tests done on them if they can, just to find out what's going on after all these years. I had Guillion Barre 27 years ago.

I got gbs when I was 9 and im now 20 years old. I still feel the pain. when I was first diagnosed I was still active enough to play football, play soccer, and freerun or parkour as some people call it, bike ride and run track. but after eleven years of having gbs if I did aany of that stuff ill be out of breath within 5-10 minutes. so yes as you get older the nerve damage takes a huge toll on the body

Hi John, I'm assuming you meant May 13 2013. I came down with GBS two days earlier than you (May 11 2013). I had the same type of GBS as you too where it not only affected the myelin sheath but also damaged the axon inside the nerves. My prognosis was to expect a long recovery. But....look at me now, I'm back to work (since mid January). I'm still not 100% yet, I still have some weakness in my left leg, my core and my left shoulder; and my feet are still kinda numb and tingly. Hands are ok. I don't see the improvements daily but after a month go by I can see small overall improvements.

Hang in there John. God Bless!

Seems like an old thread, but I am 73 have had GBS a little over one year wit a relapse at 6 months. Today I have burning feet, numbness from knee down, but can walk (like a toddler) use a cane when out. Stay optimistic, some get full recovery even at my age I think I’ll be one of them so plug on and stay upbeat. There are many things that could have been worse. I thank God it was only GBS!