Chronic Inflammatory Demyelinating Polyneuropathy is a rare immune-mediated inflammatory disorder of the peripheral nervous system.
Husband diagnosed with cidp from all tests of emg,and nerve bioposy. Has been treated since Janurary 2008 but 2nd opinion now says no cidp. He has had symptoms for 3 years and could not find the help necessary to diagnosis. You would be surprised at how many neurologists and doctors do not know what to do or look for. Thought we finally had a diagnosis until 2nd opinion says no. Still waiting (one month now) for final diagnosis. Need to get 3rd opinion as 2nd disagrees with cidp. Nerve bioposy back in Jan 2008 did not show onion bulbing which the doc did not explain to us and I have been on another support system that says if none shown then it is not cidp. We have had alot of treatments for cidp and now being told it may not be it. Time is wasting for my husband. He needs firm dx and treatment as he is getting worse.
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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
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.
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 had EMG tests for the past seven years, and believe me when I say I know about the pain involved. Gary
Hi all... Im having some neurological problems, namely pain, and am trying to figure out which illness it might be. Just out of curiosity, how was your diagnoses made? In other woreds, what kinds of tests, etc. I was also just diagnosed w/a bone disease and am wondering which one is causing which pain and what I can hope to do about it. Hope to hear from one of you!
Hello, My mom has CIDP. She has suffered a severe crisis about a year ago, when she was completely paralyzed and intubated. Since then, through combined treatment of IVIG, cyclophosphamide, steroids and physical therapy she has seen great improvements in all systems except for her swallowing system. She is still being fed through a tube (peg). Is anyone familiar with such a condition, and if so – do you know what treatments are available, and where? Thank you
General discussion for those suffering from CANOMAD, a very similar disorder to CIDP. (C)hronic (A)taxic (N)europathy (O)phthalmoplegia Ig(M) paraprotien cold (A)gglutinins (D)isialosyl antibodies I am hoping to spark some kind of support for those suffering from this because in 14 years, I have yet to find any kind of help. Nor have found anyone else with this diagnosis. Apparently only 300 documented cases. Any way, fingers are crossed.
|The Neuropathy Association||
The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.
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