Chronic Inflammatory Demyelinating Polyneuropathy is a rare immune-mediated inflammatory disorder of the peripheral nervous system.
Calmare Pain Therapy is a revolutionary, non-invasive, non-narcotic method for rapid treatment of severe, chronic, high-intensity neuropathic pain, failed back syndrome, low back pain, oncologic pain, lumbar radiculopathy and cervical radiculopathy pain resistant to opioids and nerve pain medications.
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.
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.
|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.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
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Created by Melisquent | Last updated 6 Nov 2015, 12:26 PM
Created by ImaNati | Last updated 25 Jun 2012, 02:55 PM
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