Guillain-Barre Syndrome GBS

I had GBS in 1982. Water tasting funny was my 1st symptom.

Hi! Did you have the IV treatment or plasma exchange? Or just PT & OT? I am having some MAJOR issues 43 years later. My knees are shot and I strugggle to do stairs, up or down.  Very unstable and using cane. Its like one day I was OK-I was left with resdiual weakness in ankles and calfs, no step on top toes, no running and I also was 12 years old when I contracted GBS. I'm 55 now, worked for 35 years and feel so Hanicap unlke anything I've ever felt. It's unbelievable how my instability has worsened. I am seeing Doctor for Knee issues but its no change. They constantly give out which is very anixety ridden for me. I was very active, worked 8 1/2 hours @ work, then jump on bike for 15 miles. Do all my own yard work and was ACTIVE. I am thinking to go teaching hospital because something has gone wrong. Ironically I also have finger tips issue with skin peeling off and bleeding, dry, then it callous and then it starts all ove again.

Hi Terri I sit here crying got very depressed I was 1 year in hospital I did have plasma and I can’t walk far yet I seem to get sick very fast . Still have tingling in my feet every now and again in my hands fingers . I also were they did spinal tab the hole got bigger I can’t still walk far more can I run daught I can jump lol. I’m not the same I don’t feel the same also have anxiety depression . I was on life support for quit awhile Know one that I would make it but my mind couldn’t sleep few weeks later had another episode so back on plasma. I hate winter but got to go to gym keep going .Any one Ottawa would like to join me it will help?

Me to Hun me 2/12 years now one those years 1 yr in hospital night mare of my life my feet still tingling get cold fast to .

I thank god to but the suffering still is exhausting feel depressed

I was 48 when this hit me. I thought I'd never make it to 50 but 50 was much better and this summer I'll be 52. I was so happy to get past 48 that I don't even care about the numbers any more, I feel lucky to have them!! There is nothing like healing and I wish you lots of that!

Hi Allan I know Hun I’m on 2/12 years 1 year the hospital physio when I got out now on my own Psw for 1 year paralyzed neck all the way to toes I can walk barley can get out tub so still use my bath seat my toilet thing lol still have tingling in my feet hands now again my knees so bad all medication still on I don’t even want to take them any more but I have to 4 mg of morphine cause pain in my legs . Was exercising going back any one wants to join me  Id love that in Ottawa good luck hun

Has anyone had a mild case variant where they had temporary paralysis and facial numbness and pressure in head with the severe nausea and urine retention for a short period of time but was still able to walk. I have been told it is a mild variant of gbs miller fisher.

My neurologist believes that I had a mild case of Miller Fisher too. I had facial numbness and terrible pressure in my head. I lost much of the feeling in my legs but was still able to walk but not very well at my worst point. I had trouble chewing and at one point speaking but never had the severe nausea and urine retention. I did have trouble with one of my eyes and that affected my balance. When did this happen to you?

This happened Thanksgiving last year and I am still dealing with some of it but for the most improved I had a hard time because no one knew what was happening to me I thought I was going to die. I went to Mayo Clinic Jacksonville Fl. They couldn't even figure it out a regular neurologist near me figured it out. I paid thousands to a top rated facility only to be told what wasn't wrong I had been tough. I was looking for anyone else who had twitching during and after Tha knyou for responding to me. I live in Florida

The first neurologist I saw said migraine. She wouldn't even consider GBS. The first day I was ill thought it was a stroke because of the pressure in my head and numbness but MRI was good. I went home the next day is when it hit me so hard I didn't know what was happening. I had so many symptoms. Night sweats couldn't walk had the paralysis and fatigue. Couldn't walk to bathroom my hands and legs were numb and muscle pain spasms jerking I was told miller fisher by one neurologist but not confirmed. So I went to Mayo Jacksonville and they said they thought viral infection that caused autoimmune response but that was it. I went home and thought I was dying. They did tons of labs and emg at almost 3 month later because I developed muscle twitching but that was all. I had shaking when I tried to stand my legs were like jello and I had orthostatic hypotension. I felt like someone stuck a hot poker in my spine it hurt so bad it felt like I was hooked up to a electric shower on my whole body. I would have night sweats then times when I was so hot but felt like my body couldn't sweat. I became dehydrated and malnutritioned went to ER many times for fluids. They always said we don't know. It was terrible. It takes so long to get into some neurologist that you think you will die before your u can see someone. They all want referrals. I couldn't exercise for a long time when I did I would feel so much pain in my muscles. I would be sore. It has been almost 9 months since beginning I am lots better but I was so scared for a long time. I hope you are still improving and well.

I had it and severe nausea and pain.

Yes I still get twitching took while to over come I was so active now 2/12 years but 1 year hospital but got to keep pushing as all dr say u need to swim exercise best thing for us