Reply To: Update one year after diagnosis with CIDP

April 4, 2012 at 7:30 pm

Hi Willem,
Welcome. My husband has MADSAM as well. He went through tough times getting his diagnosis too. He was an airline pilot when it struck and he had trouble with the cockpit toggle switches. Initially the neurologist said it was Carpal Tunnel and he had nerve release surgery. Things went downhill from there. Hubby has an atrophied right hand and drop foot. Had to retire from flying. Got to the point where he could not use eating utensils or hold a coffee cup. Eventually he got a second opinion with a neurologist specializing in neuromuscular diseases. Started on IVIG in 2007. Of course the damage cannot be undone, but the IVIG holds off further damage. He has lots of fatigue, unsteady balance, diminished hand grip etc. etc. But we do everything we used to (I have secondary progressive MS with vision and balance issues etc). We went back to ice skating this winter and fall a lot but at least we get out and do it. We have learned not to over exercise as that causes relapse, but we have learned to participate in all life has to offer and not let the disease become our identity. This happened in the beginning as it is shocking to get a diagnosis of such a rare thing, and hubby lost his career because of misdiagnosis and no treatment for 3 years. But we are blessed that he gets treatment that prevents further deterioration. Hubby has deteriorated a bit over the past 5 years ie. poorer balance and just a very slow decline, but I think the outlook overall is pretty good. Much better than we feared in the beginning. If you have any questions, please ask. Remain positive and don’t become your illness. My neurologist told me that years ago and it is so true.