New symptoms…

Anonymous
May 15, 2007 at 12:05 am

You are right to trust your instincts, if he is having a new pain in his arm & some numbess in his hand, then he is definitely NOT in remission. Once something is lost to CIDP, it is often hard to get it back, especially if he has the progressive form (as opposed to the relapsing/remitting.) If IVIG failed to help him, I am guessing that he does have the progressive form. How much prednisone is he on, & is it giving him anything back? Usually when IVIG doesn’t help CIDP, plasmapheresis doesn’t do much for them either. For a neuro to treat a 21 year old with CIDP & be content that he is not improving, just maintaining, seems ludicrous to me. He should be treated as aggressively as possible before further damage is done.

It has been hard enough for me to deal with this cruel illness & I began 5 years ago at age 48, I cannot imagine someone in their 20s getting this. I have a son who is 26 & in a wheelchair, but it was from a birth defect (spina bifida) & so he doesn’t know any differently. Also, he has no pain. Trust me, your son’s pain is very real, I know I could deal with CIDP so much easier if I had no pain & fatigue. After almost 2 1/2 years strictly in a power chair with no use of my hands, I now walk with AFOs & a cane, so I am very much like Kevin. I would like to help in any way I can, feel free to email me via the forum. My heart goes out to Kevin & your family…
Pam