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Anyone been diagnosed with CIDP? It's very rare
Autoimmune Diseases | Last Active: May 22 1:57am | Replies (152)Comment receiving replies
Hello @amieb, Thanks for sharing your IVIG experience for CIDP. 15 years is certainly a long time to battle with CIDP. Trying to get a diagnosis can be difficult when you have a rare condition and nothing seems to help. Do you mind sharing how you found Connect and what you were searching for?
Replies to "Hello @amieb, Thanks for sharing your IVIG experience for CIDP. 15 years is certainly a long..."
Unbeknownst from where it had come, it appeared one day in my email. A question that I replied to “has anyone else here been diagnosed with CIDP“. I felt obligated to reply I went there I signed in to make an account, and that’s how it started. So the answer is I have no idea how it came to me. Perhaps I searched for it one day some time ago at Mayo clinic which I do not recall. Wish I could be of more help, but any questions I’m happy to answer. Thank you
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I too have CIDP. The cause is autoimmunity. It was diagnosed by NCS, followed by about 3O blood tests. I have recently begun Ivig infusions. The jury's out. My first Dr. indicated "SFSN. Nothing can be done.
Take B-12"
Hopefully, Ivig will slow it down or possibly even stop the progression. Time will tell.
My best to you!