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Anyone been diagnosed with CIDP? It's very rare
Autoimmune Diseases | Last Active: Oct 7 6:02pm | Replies (153)Comment receiving replies
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."
Replies to "Has anyone heard of or experienced CIPD (chronic inflammatory ------ disease, I think). Defined as a..."
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?
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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 !