The POST GBS Crew!!!

August 21, 2008 at 1:07 am

Hi Everyone,

I never considered myself a long-term sufferer of GBS until recently.

I thought that GBS was mostly a one-time illness with very little consequences. I never followed up on GBS medically.

I always had residuals, but they were considered minor.

Now I am 20 years out of GBS, and now I am starting to have some major issues.

Everytime I have a medical appointment they find something else wrong with me.

My nerve tests come back with significant damage to my arms and legs.

I am very fortunate to be mostly functional and have little or no pain.

I wish I would have really followed up on my condition from 1988.

I was very ignorant to the long-term issues related to GBS. I probably would have lived a different life and made some very different decisions.

Now Post GBS is somthing I have to deal with everyday.

I have new symptoms coming to light all the time. I am hoping I have not progressed to CIPD, but it is a possiblity.

I am finding that the medical community does not really know what the long-term affects of GBS are. They can not explain what is going on. A lot of what I have learned has been by reading and doing searches on the Internet. I have found the Forum very helpful as well.

All I can say is that you listen to you body and follow up on this life long condition.

No matter how much you recover it is likely you have some type of long-term damage they may come to light immediately or later in life.

I did just a few simple things today, and my arms went numb and extremely weak. This reminds me that beyond doing nothing that I have issues.

Lets try to keep in touch and follow up on what is going on.

I am learning more everyday!!!

Take care and take it easy!!!

GBS Survivor!!!


GBS 1988
CIPD Maybe in 2008