August 8, 2008 at 12:37 am

First off, I would like to welcome you to the forum. Many of us come here because as understanding as our wonderful family members are, they can’t ever really get it. What we have been through, what obstacles we face each & every day; the disability part, the fatigue, the pain, the always wanting to be the person we once were. I am guessing that what your neuro is trying to tell you is that your form of nerve damage is more permanent, that the axon itself is damaged. Or the fact that you are still getting IVIG makes me wonder if he is referring to a more chronic form of GBS, such as CIDP?

Many do make what doctors considerer a “full recovery” from GBS. The number is supposed to be 80-85%. But I do think that many of these people still suffer from residual fatigue, most people seem to. Until you are two years out, I would keep up hope for a full recovery, as damaged nerves can take that long to heal. After you pass that mark, something strange begins to happen… people tend to become more accepting of things the way they are.

I was an excellent athlete when I got hit with a severe case of CIDP. If someone would have told me that I would spend 2 1/2 years in a power chair with no use of my hands at age 48 I would have never believed it. For the past 4 years I can now walk with leg braces & a cane. But after 6 years I have accepted this as my new norm. I doubt that I will ever completely be content to have this illness, but I no longer mention it to my family. I guess I am so used to it, can hardly remember what it was like to run, or even walk for long distances. I do hope you make a full recovery, however…