Liz’s story…

December 3, 2007 at 11:00 pm

I thought that was very well thought out & beautifully written. I would say that in your case the CIDP probably just “burned out” or stopped progressing for some reason. It has just been too long for me to believe that you would relapse again. I know that the chemo I underwent put me into a remission as well; I no longer wonder what I can do in the morning when I wake up, unlike the first 8 months when I would wake up with very noticable deficits.

I am like you as far as the fatigue, I don’t sleep nearly as much as I use to, rarely take naps, but I still always have a “tired feeling.” I believe that IVIG would probably be a waste of time for you at this point, just as it would be for me. What residuals I have right now I believe are permanent. I no longer try to test myself to try many new things, as I seemed to have learned what my brain tells me I am able to do. I can live with that, most of the time anyways. I have not given up hoping for some kind of improvements, but nothing radical at this point. I have good days & bad days, but there are worse illnesses out there, I guess I will take CIDP for now…