CIDP Support Group

Hello Glenn @cgrogers, Welcome to Connect. You will find members talking about CIDP in the Autoimmune Diseases (https://connect.mayoclinic.org/group/autoimmune-diseases/) and Neuropathy (https://connect.mayoclinic.org/group/neuropathy/) support groups. Here are a list of the discussions related to CIDP that I found with search:

— 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/
— CIDP (Chronic Inflammatory Demyelinating Polyneuropathy):
https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/
— Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions:
https://connect.mayoclinic.org/discussion/cidp-having-ivig-reactions/
— CIDP and concerns about treatment risk factors:
https://connect.mayoclinic.org/discussion/cidp/
— Searching For Diagnosis. CIDP? Please Help Me:
https://connect.mayoclinic.org/discussion/searching-for-diagnosis-please-help-me/
More information on subscribing or unsubscribing to discussions and groups is available in the Help Center here: https://connect.mayoclinic.org/help-center/.

I look forward to learning more about you. What is your CIDP story? Are you getting treatment currently?

I was only recently diagnosed with CIDP, but I have had it for over 13 years!! I have been unable to get ANY MEDICAL PROFESSIONALS to do ANYTHING to even diagnose it, let alone treat it because of how I got it!!! Johns Hopkins even said to me directly, on the phone, "If you insist on attributing your illness to "that", WE WILL NOT EVEN SEE YOU!!!!!" They have hung me out to dry (more appropriately – to die) because of a huge lawsuit back in 2001. I was attacked by something that attacks and eats the myelin sheath off the nerves!!!! And I know about demyelinating diseases because I had a little grand niece die at age 2 1/2 from Batten's Disease! —- Frankly, I just don't know what to do with myself. It's a little bit late for early intervention!!! But I do want to live long enough to complete a very important book I have half written, and continue motivational speaking. Lynne Henry 5/14/2023