CarlHistory

Thank you for the welcome Scott. I probably pushed a few wrong buttons before I figured out how to leave a comment.

After 70 + very healthy years with lots of football and ice hockey etc. I had some finger/toe numbings since Thanksgiving and then got slammed in mid April, after a severe intestinal attack. Now I can walk a few hundred or more yards, with ski poles, and get around the house with the help of walls and chairs, but fatigue easily. My fingers and toes tingle and I have little feeling in my middle section, sphincters etc (fortunately they still work!) Two weeks ago I fell over (stupidly) and fractured my ankle, so that is adding to my problems. I am staying off my ankle mostly, but exercising on my total gym to try to keep up muscles without risk. I have had the first three treatments of immuno globulin, but with little to show for it ..I guess something as my typing is better. I was a professional in Syracuse NY and we moved to Montana where I used to live and where I met my wife, in part because we both love it here I love to fly fish --but that is out now. I am able to continue writing my professional papers so I am not bored, although there are other things I would like to be doing in my retirement.

I am facing the real possibility (not yet probability) that I will not improve much and I would like to hear from some people with long term issues.... I have access to the best in the country in Boston through my sister but they say that the diagnosis and treatment I am getting from Dr. Stone in Kalispel is top notch.

I retired in May at 242 pounds, went down to 226 by TG due to lots of Mtn Biking in my back yard and bird hunting, and have now lost an additional 30 pounds due to the disease (my appetite is very low). I may have stabilized. My goal is to be able to ride my Mtn Bike again , but I realize this might not be possible.

I have found this a very good apparently realistic overview, although some of you may have something different to add:

Dr, Richard Barohn Chair Dept Neurology Univ Kansas Medical Center

Overview of diagnosing and treating CIDP

http://www.gbs-cidp.org/home/cidp/cidp/

RogEconomist. A take off of your CarlHistory. Your situation sounds just like mine. I was playing b ball with 30 somethings and a month later I came down with this CIDP. It is really hard to take the contrast.

It now has been going on for two years with gradual regression

rjStoll -- Are you regressing or is disease ..i.e. are you getting any better?