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 | Apr 26 10:36am

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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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 26 9:35pm
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 | Apr 26 10:18pm

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 | Apr 28 1:23pm

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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1 reply
danmccann63 | @danmccann63 | 5 days ago
In reply to @kgitti "73 age here. Yes I was diagnosed in late 2019/early 2020. Then 3 years of twice..." + (show)
@kgitti

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.

Jump to this post

Living with it sucks but what really makes me irked, is that many times, I have to explain it to some doctors. I, like you, have had a pretty lucky and great life and family. Makes “dealing” with it easier…

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church5x | @church5x | 5 days ago

I know i'm responding to an old post, but am looking for fellow CIDP'ers. I have recently been diagnosed and going through IVIG treatments. I have had 3 so far (first one being a double does over 2 days). I have not seen many support groups around this disease.
I was diagnosed in March 2024, and although through out the fall I had minor symtoms, I had no idea what was going on. Just slowly started to lose strength. I couldn't life baking pans, legs started getting shaky, writing was difficult. By February, I was unable to climb stairs, stand up from a sitting position, use my hands in any useful way, and very very unsteady on my feet. It progressed so rapidly I spent about a month needing a wheelchair for any outside walking or activities.
Luckily I was hospitalized and the neurologist who saw me was able to easily diagnose me. I feel very fortunate for this as no other doctor could figure out what was wrong with me. All of my tests came back normal! I have read it could take years to be diangosed, so I am so thankful that this neurologist crossed paths with me.
The treatsments seem to be working in that I can walk much steadier, and able to climb stairs with the help of a handrail. I do get headaches on a regular basis following my infusions, and try to drink a ton of water to combat this.
Not to be dramatic, but this is life changing. All plans work around 3 week infusions, side effects, and feeling yucky after them. I know I should be thankful that I can function independenly once again, but sometimes just get caught up in the "sorry me" state. I would love to hear from others, and how you handle the physical and emotional/mental part of this disease.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | 4 days ago
In reply to @church5x "I know i'm responding to an old post, but am looking for fellow CIDP'ers. I have..." + (show)
@church5x

I know i'm responding to an old post, but am looking for fellow CIDP'ers. I have recently been diagnosed and going through IVIG treatments. I have had 3 so far (first one being a double does over 2 days). I have not seen many support groups around this disease.
I was diagnosed in March 2024, and although through out the fall I had minor symtoms, I had no idea what was going on. Just slowly started to lose strength. I couldn't life baking pans, legs started getting shaky, writing was difficult. By February, I was unable to climb stairs, stand up from a sitting position, use my hands in any useful way, and very very unsteady on my feet. It progressed so rapidly I spent about a month needing a wheelchair for any outside walking or activities.
Luckily I was hospitalized and the neurologist who saw me was able to easily diagnose me. I feel very fortunate for this as no other doctor could figure out what was wrong with me. All of my tests came back normal! I have read it could take years to be diangosed, so I am so thankful that this neurologist crossed paths with me.
The treatsments seem to be working in that I can walk much steadier, and able to climb stairs with the help of a handrail. I do get headaches on a regular basis following my infusions, and try to drink a ton of water to combat this.
Not to be dramatic, but this is life changing. All plans work around 3 week infusions, side effects, and feeling yucky after them. I know I should be thankful that I can function independenly once again, but sometimes just get caught up in the "sorry me" state. I would love to hear from others, and how you handle the physical and emotional/mental part of this disease.

Jump to this post

@church5x Welcome to Mayo Clinic Connect. I’m so glad you found us! Some autoimmune diseases are much more difficult to diagnose than others, CIDP being one. Luckily, yours has been diagnosed and now you’re getting treatment, I’m not sure if you saw this discussion:
https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/
When you complain about your ‘sorry state,’ you’re just like everyone else with an autoimmune disease. I was diagnosed 6 years ago with a different AD and I still have ‘woe is me” days. I worked with a therapist for awhile and am looking for a new one. It’s like you’ve suffered trauma—you’re healthy one day, and the next, you can barely walk. You are doing better now and hopefully, will continue to do so. But remember, you’ve had a major shock and the disease will always be with you. So, find a therapist, and don’t think you have to explain all the details to others!
Can I ask how you found Connect?

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