Had GBS at 8 years

    • Anonymous
      July 11, 2011 at 5:23 pm

      I am hoping my story will help others. I was diagnosed with GBS when I was 8, in 1972. I was living in rural Saskatchewan and remember there being alot of uncertainty as to what I had. It started with with the tingling in my hands and feet and eventually lead to diminished motor control. I don’t recall alot of details, and only what an 8 year old would remember. I felt very sorry for myself being unable to walk or get around. I spent a whole summer doing very little. I remember having to be tied into my chair at the dinner table and spending longs hours on the couch watching television. I had no appetite and lost alot of weight. I do recall never being hungry but I was never eating. My mother spent alot of time doing physical therapy with me. I had no feeling in my feet and to this day still don’t have alot of feeling or reflexes – which my friend thinks it is crazy to run a pen along the bottom of my foot and there is no response. I never linked my severe muscle spasms in my feet or the lack of reflexes and feeling to GBS – just thought of it as my norm. It was a worrisome time for my parents and they refused the recommended cortisone shots for any of my treatments (for which I am now grateful). My mother was diligent with my therapy although I cried a lot. I don’t know if lack of knowledge of GBS at the time was good because in our case not knowing of the possible complications made us all believe in a full recovery. Which has been the case. I am pleased to report that I live a fully functioning life. I particpated in school sports (was I the star – no). At 45 I competed in my first duathalon. In high school and to this day I continue to be an avid cross-country skier participating in 30 km treks. I was never told to never have a flu shot – but I have had several. In reading others stories, I can see how horrible GBS can attack some. I am not sure if being young benefited my outcome. It would appear that the older you are, the tougher GBS seems to kick. I hope I can give parents some belief that it will all work out in the long run. I have definitely survived GBS and I live a perfectly normal life. Whenever a new physician asks about my medical history they seem fascinated and ask me a lot of questions. I finally asked one – why so much interest? Then I was told that some people don’t experience a full recovery and some end up in ICU for a long time. So I looked up GBS and learned how fortunate I have been. Recently, I had an MRI done on my hip for problems I have been having. The doctor told me that it had nothing to do with GBS. My response was “I never ever considered that it did.” I find it interesting that the medical profession is inclined to want to blame my ailments on something that happened to me nearly 40 years ago! It has never occurred to me that I have any long term problems because of GBS. I don’t believe I do. I hope that many of you, over time find that also to be the case. I wish you all an active life with a full recovery and want you to know that it is possible.

    • Anonymous
      July 11, 2011 at 6:45 pm

      Thanks for sharing your recovery from GBS. It is important for all of us GBS or CIDP sufferers to hang on to hope. Testimonials like yours are wonderful reminders that nerves and muscles can heal.