Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Chronic Inflammatory Demyelinating Polyneuropathy

What is Chronic Inflammatory Demyelinating Polyneuropathy?

Chronic Inflammatory Demyelinating Polyneuropathy is a rare immune-mediated inflammatory disorder of the peripheral nervous system.

 

Chronic Inflammatory Demyelinating Polyneuropathy is a rare immune-mediated inflammatory disorder of the peripheral nervous system.
Acknowledgement of Chronic Inflammatory Demyelinating Polyneuropathy has not been added yet.
4.4http://www.orpha.net
Synonyms for Chronic Inflammatory Demyelinating Polyneuropathy has not been added yet.
Not always known but some causes are flu shot, shingles, cold or flu, surgery, stress, toxic chemical, probably many more...
Numbness starts in feet and goes up legs. Next would be hands and up arms. Painful electrical shooting pains in the beginning where even a sheet in bed cannot be used. Later no feeling in these areas. Walking with a cane or maybe walker or even a wheel chair if not diagnosed in time for treatment.
Diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy has not been added yet.
Diagnostic tests of Chronic Inflammatory Demyelinating Polyneuropathy has not been added yet
steriods along with imuran, or ivig, or plasma phersis
treatable but no cure
Tips or Suggestions of Chronic Inflammatory Demyelinating Polyneuropathy has not been added yet.
References of Chronic Inflammatory Demyelinating Polyneuropathy has not been added yet.
<a href="http://calmareaz.com/what-is-calmare/">Calmare Therapy</a> Created by Melisquent
Last updated 6 Nov 2015, 12:26 PM

Posted by Melisquent
6 Nov 2015, 12:26 PM

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.

CIDP- What is it? Created by Archie
Last updated 24 Jun 2014, 10:05 PM

Posted by Archie
24 Jun 2014, 10:05 PM

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

Posted by springmang
24 Jun 2014, 09:10 PM

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.

Posted by Archie
28 Feb 2011, 10:04 PM

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

View Full Thread (1 more posts)
Diagnosis Created by Revsma
Last updated 31 Dec 2012, 05:34 PM

Posted by springmang
31 Dec 2012, 05:34 PM

I've had EMG tests for the past seven years, and believe me when I say I know about the pain involved. Gary

Posted by Revsma
19 Dec 2011, 03:02 AM

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!

CIDP related swallowing problems - any treatment? Created by ImaNati
Last updated 25 Jun 2012, 02:55 PM

Posted by ImaNati
25 Jun 2012, 02:55 PM

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

CANOMAD Created by Sanchin7297
Last updated 26 Aug 2011, 06:26 PM

Posted by Sanchin7297
26 Aug 2011, 06:26 PM

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.

chronic inflammatory demyelinating polyneuropathy Created by joanf
Last updated 28 Sep 2008, 04:54 PM

Posted by joanf
28 Sep 2008, 04:54 PM

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.

Community External News Link
Title Date Link
Community Resources
Title Description Date Link
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.

03/20/2017

Clinical Trials


Cords registry

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.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

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.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

Dr. Ryan Wade, D.C. is a Bo...
I have had CIDP for about f...
I was diagnosed 2 years ago...
In December of 2011 I was t...
i am a 43 year old medicall...
Artist, Musician, Seeker, D...
I am a 45 year old woman wh...
My name is William (Bill) P...
I have a lot of health prob...
CIDP since 2006 <p>&nbsp;</...
A slow processing CIDP neur...
construction inspector and ...
Caregiver for husband who h...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

CIDP- What is it?

Created by Archie | Last updated 24 Jun 2014, 10:05 PM

Diagnosis

Created by Revsma | Last updated 31 Dec 2012, 05:34 PM

CIDP related swallowing problems - any treatment?

Created by ImaNati | Last updated 25 Jun 2012, 02:55 PM

CANOMAD

Created by Sanchin7297 | Last updated 26 Aug 2011, 06:26 PM

chronic inflammatory demyelinating polyneuropathy

Created by joanf | Last updated 28 Sep 2008, 04:54 PM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.