1. < Autoimmune Diseases

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 | @brejay42134 | Mar 18 2:48pm

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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harley22 | @harley22 | Mar 18 7:20pm

I also was diagnosed with CIDP and had 8 mos of IVIG infusions every 2 weeks, and they did not help me at all.
I didn’t do plasmaphoresis, because I was afraid it might not work for me,after reading a study that was done ona patient.

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danmccann63 | @danmccann63 | 4 days ago

I've been diagnosed with CIDP since 2017 and have had a Port implanted I to my chest for weekly infusions, which I will apparently do for the rest of my life.....only slows down the progression.....compliments of Agent Orange...
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Becky, Volunteer Mentor | @becsbuddy | 4 days ago
In reply to @danmccann63 "I've been diagnosed with CIDP since 2017 and have had a Port implanted I to my..." + (show)
@danmccann63

I've been diagnosed with CIDP since 2017 and have had a Port implanted I to my chest for weekly infusions, which I will apparently do for the rest of my life.....only slows down the progression.....compliments of Agent Orange...

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@danmccann63 Welcome to Mayo Clinic Connect! I’m glad you found this site. Everyone here is so helpful! You said your CIDP is compliments of Agent Orange. AO has done lots of bad things to people’s health, but it seems to take years to show up. What year were you in Vietnam?

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danmccann63 | @danmccann63 | 4 days ago

I was in country 67, 68 and 69.......Tuy Hoa, Na Trang, Cun Son, Da Lat, Central Highlands, Vung Ro and all parts in between. Heavy Construction with ourselves, 173RD and Korean Whitehorse Marines....

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kgitti | @kgitti | 2 days ago

73 age here. Yes I was diagnosed in late 2019/early 2020. Then 3 years of twice weekly IVIG and steroids and then weekly SCIG Hizentra and occasional steroids since for late ups.
Not an easy battle but it can, in my experience, achieve a halt in the progress of the disease and with PT etc. get some limited progress.
I have a good life with a lot of effort, good doctors and family support.

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