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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
Autoimmune Diseases | Last Active: Oct 13 3:46pm | Replies (312)Comment receiving replies
I have. I was getting infusions since 2014 until last year. They stopped working for me. I did not feel any different the day before and infusion or the day after, so the neurologist and I agreed to stop them. I also tried plasmapheresis which did nothing. I was paralyzed from head to toe twice with CIDP. I walk now (usisng a walker). I still have terrible neuropathy. I cannot take steroids because of severe osteoporosis.
Replies to "I have. I was getting infusions since 2014 until last year. They stopped working for me...."
@txamo I wonder if you are taking bisphosphonates for your osteoporosis? Another Connect member, @sunnyflower has recently been struggling with whether to go back on them. They have caused her very significant pain in the past as a side effect but are supposed to make your bones less fragile I assume. I hope you do not have to take them.
One of the earlier posts in this discussion was interesting, where @sherlock says "I had 3 years of monthly treatments and didn't see improvement until after a year. I'm now in remission and just have pain associated with neuropathy. Diet is extremely important in controlling the symptoms. Eliminate sugar, dairy, gluten, red meat. Eat lots of greens, enjoy green smoothies, drink lots of water." Decided to pass this on in case you did not read it. Might be something to look into. But forgive me if this is something already obvious to you.
I truly hope something clicks for you. It's awful to live with such a condition. But you say you do have good people support in your life? If so, that is BIG. By the way, I have found that reading through historical posts from this forum can be very useful. Just put CIDP into the search window at the top of the page and start reading. Again, my very best to you. Hank
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@txamo Hello. I've read your posts and cant bring myself to hit that little ♡ and "like" them. Simply because liking what you are saying just doesn't feel right. So, here I am wanting to let you know that I have deep fealt empathy for you and your chronic pain diagnoses. I'm very happy you received beneficial help with IVig for 5 years and were able to overcome being paralyzed. That is a miracle. It's time to brainstorm again however. I have small fiber polyneuropathy and tried lidocaine infusions for 5 months. Although they did not work for me, they do for some. Has your neurologist ever mentioned this treatment?
Ketamine infusions have greatly benefited some people. I recall a lady here on Connect being in a wheelchair and then being able to get out and walk with the help of Ketamine infusion. When I inquired about Ketamine with my neurologist I was told he does not provide the treatment nor does his affiliated medical college hospital, and that I'd have to pay out of pocket typically. I truly wish you the best of luck with forward progress and pain relief. - Rachel
PS: Wondering if you have ever been treated at Mayo Clinic?