I have just found this site and am trying to get any information about CIDP. I have been diagonised with this but my symptoms are different than what is listed. August 2008 I woke up from sleep unable to get enought air. After a stay in the hospital pulmonary and neurology testing we found out that my phrenic nerve which triggers the diaphrgam has disappeared. An EMG test is negative other damage is in lower legs and hands but generally getting around OK. I have to remain verticle to keep breathing without additional means. I am undergoing IVIG treatments but not sure if these will help. ANY SUGGESTIONS ARE APPRECIATED.
Other diagonsis is bi-lateral diaphragm paralysis.
This is an update (Feb 2011) that the testing I just completed shows that I am about the same as I was last year. Last year was about the time I had finished my first year with this problem. I didn't think I needed additional test until I could feel a difference. This recent test was to double check where I am. I am keeping focused on fixing myself. I will keep you posted God willing
I've gone through all the testing too, and have remained the same. Atrophy in both my arms and legs, This disease is like shadow boxing, you just never seem to get him, but I won't give up and I hope you don't either.
I had a physical Jan 2014 in which everything seemeed 'normal' except for the breathing problem. Blood work was 'perfect'. Over the years I have learned to work with the physical limits I have. I often wonder if there are people that die from heart attacks are really sometimes caught with this breathing problem but were unable to get air before passing out and dying. I mentioned this to doctors who tell me that I don't know what I am talking about. The interesting thing is when I first came to the hospital years ago- all the medical energy was spent taking care of my heart since it was racing, blood pressure was up, headache, etc