Anyone been diagnosed with CIDP? It's very rare

Posted by Foxauthor @foxauthor, Oct 28, 2011

Has anyone on this feed been diagnosed with CIDP (chronic inflammatory demylenating polyneuropathy)? It's very rare and not well known about. I can't even find it in the list of diseases on Mayo's site. It's on the web, and I am on the national registry with the GBS-CIDP national organization. Anyone else out there have it?

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@brejay42134

I was diagnosed in July of 2017 and take monthly ivig outpatient and plasmapheresis quarterly inpatient with little improvement. Any suggestions?

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Hi, do you have a port for your plasmapheresis?

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I was diagnosed last August with Guillain Barre Syndrome following a Covid infection and subsequently diagnosed with CIDP. The CIDP symptoms had been going on for years but unrecognized by ny of my Drs. I’m having a lot of muscle weakness in legs, but also arms and hands. Balance is so bad I use a walker or would fall over. On IVIG every 3 weeks, which has helped but is getting less effective. It truly is a life changer and you’re entitled to some pity parties and down days. It has taken most of my independence and ability to function away. I do everything I can do from a recliner chair or sitting at a table. My tolerance for standing and walking is about 5.minutes. It’s important to focus on what you can do and not make your illness the only thing you can talk about and think about . I have a therapist and take antidepressants which keep my mood from sinking into despair. It’s the hand of cardswe’ve been dealt but we can still play the game and win. Good luck and I hope for success with treatment!

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