Reply To: need spome advice on this cidp rollercoaster ride??
I was wondering? Did the pe give you any improvement? It seems like the ivig really did not help that much either. Is the cidp dx confirmed? I only ask because Charcot Marie tooth, a form of MD also presents the same way physically and the ncv/emg looks the same as cidp. CMT was actually our second dx, but I knew it was wrong because we went down so hard, so fast. We went to the next doc and I suggested gbs, he agreed and did a spinal to confirm. The genetic testing for CMT goes to a specialty lab and takes six weeks, so we did the spinal for a quicker conclusion. The CMT eventially came back negative. I only bring this up because youdo not seem to get any relief from the pe or ivig AND the steroids made you worse. Just a thought.
Also Lori222, will your doc let you get treatments at home? It would be so much easier on you, we love our nurse, we always get the same one, poker games, dinner, movies, xbox, our nurse is awesome my son and the nurse (a guy) have so much fun in the man cave for 6 hours!