[livingwith]

I have been battling reoccuring GBS for approximately 10 years. I was 36 when I was first diagnosed. It took several months to recover after receiving my first five day treatment.
Several months after my first treatment, I was back to approximately normal.
A year and half later the symptoms came back (numb and tingling hands and feet and weakness in my legs and arms). My GBS comes on slowly and over a two or three month period. It always starts in the hands and feet and progresses up the l...Read the full article

[seaangel2364]

Hi- I was 39 when "attacked" with the crap. I was in a coma for a month, on a ventilator, and awoke completely paralyzed. It was sometime before I walked again, and just when I could I got it again. That was when they only had the plasma pherisis, and due to "insurance" problems have suffered silently since. I am now 44 and have been couch ridden for two years. If not for my husband I truly would no longer be here. Anyways, I finally have good insurance and will see my first nuerologist since July when I found out the nerve damage in my legs was worse.
Everyday I seem worse and all I can compare my days to is living constantly with a sting ray, or jellyfish sting sensation. I fall all the time and can hardly wash my own hair. So I'm so happy to hear that you have "bouts" of normal-ness. I can not remember what a good day is like.Hopefully with this new Ivig treatment I will know again. I can't do this much longer.Take care and keep feeling good okay. Be thankful everyday that you get to feel the normal this disease takes away from too many.
Take care, Shawn

[gord]

I'm 65 years young and 1 year ago in april had some tingling in my little toes, being very active i thought it was a pinched nerve, however it got worse so I called my doctor who told me to go to the hospital. once there a doctor diagnosed me with gps and I was transported to a big hospital. once there the adventure started and within 3 hrs I was paralized from the neck down, for some reason it missed my chest but included my head, arms, torso and legs. long story short 70 days in hospital in neorolgy and physio, 11 neorologists 8 physiotharapists and a psychologist later and I am on the upside of grass. I have had an adventure unlike anything I have ever experienced before. from learning to walk , talk, use my hands and body functions all over again including getting over double vision and hearing loss as well as swallowing and as well losing 30 lbs. Each and every day was a challenge and I have total recollection of every minute of my adventure in the hospital and what happened there. I am in the process of chronicling the events and how I handled each situations. I am a lucky man according to all my care givers and from what I have read on these blogs. I am back to about 85% functionalbility of my former self and am progessing upward daily. more to come later
gord

[jlewis]

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[juliek1977]

Hi there,

I was just wondering how long it took for your doctors to decide that it was the chronic form of GBS..?

My situation is a bit unique in the fact that I contracted GBS back in October, when I was 24 weeks pregnant. I had no preceding infection that we can identify. I had 5 doses of IVIg, which seemed to help, although my symptoms never completely resolved. Thankfully, it never hit my lungs, but my feet, hands, and face took a beating. I had bilateral facial palsies, so my face looked like a stone and wouldn't move. Thankfully, that is almost resolved.

However, before Christmas, I noticed that the tingling and numbness was getting considerably worse again. Just this past week, I finished another 5 doses of IVIg. I'm noticing a difference already, but I also recognize that the pregnancy just adds to the fatigue, which I've also learned can cause/instigate relapse.

They haven't quite decided if this is still AIDP or CIDP, and I guess time will tell. How many relapses did you have before you were "labelled" as Chronic?

The even wilder thing about my whole situation is this. Guillain-Barre is rare, as it is. However, it is even rarer in pregnancy. The team of specialists that have been taking care of me can only find 30 cases of this in the medical journals. That being said, I still would have much rather won a lottery. =)

thanks for any advice/answers you may have.

Julie