Reply To: questions from recently diagnosed CIDP

March 21, 2013 at 1:33 am

ahhhh.. same thing happened to me!! wrote a long post and it got deleted …. I am SOOOO sorry you are going through all of this.. I remember just waiting for IVIG.. I was waiting for ANY treatment, and it seemed like the dr’s didnt’ care, ore didn’t realize just how fast i was declining.. I felt like I was going to wither away – i coudln’t take care of my kids, work, hardly eat, you name it … it was devastating..


I also had that heavy concrete in my shoes and hands.. it was so awful.. I”m glad they aren’t making you get the nerve biopsy, but am shocked especially if your test clearly show CIDP why insurance isnt’ approving it yet?  Did the prednisone seem to make things way worse? Have they talked about other immunosuppression/cellcelpt etc?    So sorry you are going through this.. I really feel for you.. I’ve been there