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Anyone been diagnosed with CIDP? It's very rare
Autoimmune Diseases | Last Active: 2 days ago | Replies (146)Comment receiving replies
Hello @jgk85 and @kruppm — welcome to Mayo Connect. I don't have Chronic inflammatory demyelinating polyneuropathy (CIDP) but do have small fiber peripheral neuropathy (SFPN). I only have the numbness with my SFPN so there are no medications/drugs that help me. I do take a regimen of supplement to help (hopefully) with the nerve repair/regeneration.
I am tagging other members who have posted in other CIDP discussions to see if they can offer suggestions for you. @gratefulone @jazzy27 @lindy1956 @suziep @mllucas @ginifuller @captnick @kdp3186 @5134177246 do you have any suggestions for @jgk85 and @kruppm ?
@jgk85 I see that you have been battling CIDP for a long time. Thank you for sharing what helps you and more. I'm hoping others will be able learn from you and share what they have learned also.
@kruppm thank you for being an advocate for your son. I'm sure it's not easy for him. There is a post by @jazzy27 earlier in the discussion about the use of another medication for lymphoma which mentions that it cured his CIDP. Here is the link in case you are not able to find it.
-- https://connect.mayoclinic.org/comment/99972/bookmark/?ajax_hook=action&_wpnonce=9f91777e48
If you want to ask a specific member a question just tag them with their @username and ask your question. That way they will receive an email notification and a link back to your post.
John
Replies to "Hello @jgk85 and @kruppm — welcome to Mayo Connect. I don't have Chronic inflammatory demyelinating polyneuropathy..."
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I've had CIDP for 4yrs now. I go to the University of Minnesots to Drs. Now last Wednesday they tell me I may not have CIDP. i've been getting IVIG for 4 yrs every 2 to 3 week and Steroids by IV for the last 4 months they don't like the way the nerve's are demyelinating. Only thing is they still haven't told me what it could be The Dr. i'm seeing is suppose to be one of the Universities best in the field of Neuropathies. I don't know where to turn I've had a bad experience with the mayo years ago. So you can see I'm not ready to jump on the mayo band wagon right yet. I was a guinea pig for them back in 1988 when they where doing Roux-en-Y stomach surgery sure I lost 150 lbs but they just dropped all of us never followed up with any of us after we were done with the basics not a word never told us we should be taking certain vitamins or supplements which I feel they should have at least sent a letter to expatients.