Anyone been diagnosed with CIDP? It's very rare

Sure, I’ve had three months of IVIgs and will be seeing the neurologist in early December. The results so far are a bit of improvement followed be a regression. Will be interested to hear what the doc says. Stay tuned!

Tony

My husband had recently fallen a few times due to leg weakness, no other problems. Had several tests including EMG . The result, "Meets the criteria for a multifocal demyelinating neuropathy". However a blood test, Ganflioside IgG/Igm Ab Panel, result came back negative for multifocal motor neuropathy. I'm not so sure that he has CIDP. He has been a big drinker and I think that the alcohol acting as a toxin caused inflammation esp. in the gut. His white blood cell count was 27 , Sed rate 109 & C-reactive protein 450, all markers for inflammation. The inflammation was perhaps caused by "Leaky Gut". He has stopped drinking and just finished round two of intravenous immunoglobulin for the treatment of CIDP. He is feeling better, no more falls, but I tend to think that is because he stopped drinking. I hope to get an appointment with a neurologist that is an expert on CIDP. Any feedback would be appreciated. Thanks !

Chronic drinking of alcohol can cause peripheral neuropathy. That said, for members' reference, CIPD is not indicated as alcohol-related in this definition:

CIDP is caused by an abnormal immune response. CIDP occurs when the immune system attacks the myelin cover of the nerves. For this reason, CIDP is thought to be an autoimmune disease. Health care providers also consider CIDP as the chronic form of Guillain-Barré syndrome.

Thank you that's what I thought. We're going to a neurologist who is an expert on CIDP as there doesn't seem to be any specialist in alcoholic neuropathy or myopathy abuse that I can find. The computer is my main source of information on the topic. My hope is that this neurologist will rule out CIDP. I very much appreciate your taking the time to respond to me.

Has anyone heard of or experienced CIPD (chronic inflammatory ------ disease, I think). Defined as a "slowly developing auto-immune disease, it will end in inability to walk, confinement to a wheelchair). I am looking for a diagnosis of my symptoms and came on this. Treatments seem to be something like "immunoglobulin infusions."

My husband had balance & falling issues. One neurologist said he had CIDP. He got 3 rounds of infusions, which didn't seem to make a difference one way or another. We made another appointment with an Irish neurologist. He paid careful attention to what my husband said regarding his medical & drinking history, which was previously given to 3 former neurologists. The doctor told my husband to stop drinking and things should improve. Now, after 3 months of sobriety, he is much improved...good luck !

My Rhematologist suggested I might have this -have you found a way to get a clear diagnosis?

@jshdma and @dcesarek, I moved your posts to this existing discussion about CIDP:
- Anyone been diagnosed with CIDP? It's very rare: https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/

I did this so that you can read previous posts and connect with other members like @casey1329 @tonyinaus @txsongbird @grokking @davehayward1 @amieb so they can share their diagnosis story and how CIPD was discovered for them.

What testing have you had done so far?

3 EMG tests, many blood tests mainly to rule out cancer, brain scans, MRI & PET scan plus physical exams by 4 neurologists.

You can find a lot of helpful information here: https://www.gbs-cidp.org/