Reply To: questions from recently diagnosed CIDP

March 21, 2013 at 7:38 pm

I am slowly declining daily, but try to keep it in perspective as I know there are people who cannot walk or use their arms at all.  Mornings are worst, but by late afternoon I have slight improvement.  Overall, however, I continue to lose ground and have difficulty with many basic activities of daily life.  I have started trying to lift a 1 lb. weight with my arms as a measure of how I’m doing.  Sometimes I can lift it using certain muscles to a certain degree; other times not.  For example, with the weight in my hand, I could not curl it with my bicep.  I could, however, lift it with my palm inward and could push it up to about my head, then with a lot of effort I could push it just a little farther.  This is a far cry from my days of walking, biking, weights, and athletic activity.

GH, are you saying that prednisone may not have reached its effectiveness yet?  I’ve been taking it for 3 weeks and thought I got a little boost the first couple of days, but since then it’s been a pretty steady decline.

I’ve been looking through my test results and notes and the best I can understand it, everything clearly points to CIDP as the diagnosis.  Two neurologists agreed on the findings after the initial EMG/NCV, then followed with the lumbar puncture which showed elevated protein.  (And of course, MRI, other labwork and clinical observations.)

I found this article from NIH that came out in Nov. 2012.  From this and other things, it appears to me that nerve biopsies are only indicated when there are problems making the diagnosis from other tests.

I hope I can find the right treatment and get back some of the function I’ve lost in strength, range of motion, and mobility.