CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

sb4ca | @sb4ca | Jul 3, 2023

In reply to @colleenyoung "@shariday, I add my welcome. You'll notice that I moved your message to this existing discussion..." + (show)

I also am looking for a CVID group but there doesn't seem to be subgroup and I'm looking at both neurology and autoimmune. Is there a central group for this?

sb4ca | @sb4ca | Jul 3, 2023

In reply to @tonyinaus "Hi Justin, please add me to the CIDP discussion group. I was diagnosed earlier this year...." + (show)

I would also like to find other with CIPD. Is there a central group?

sb4ca | @sb4ca | Jul 3, 2023

Looking for others with this disorder. My neurologist has said my balance is being effected and I can second that. I'm afraid others might think I'm drunk. Just repeated testing and he said our next visit he wants to discuss IVIG which I've had before though that was for a primary immune deficiency

John, Volunteer Mentor | @johnbishop | Jul 3, 2023

In reply to @sb4ca "I also am looking for a CVID group but there doesn't seem to be subgroup and..." + (show)

Hello @sb4ca, There isn't a separate support group for CIDP or CVID but there are other discussions for the conditions that you might find helpful including this one in the Autoimmune Diseases Support Group:
--- Does anyone else have CVID?: https://connect.mayoclinic.org/discussion/does-anyone-else-have-cvid/

If you type into the search box at the top of the Connect window and type in a term or phrase, you can locate other discussions, comments, newsfeed articles and more. I searched using CIDP and using CVID and here are the search results:

--- CIDP: https://connect.mayoclinic.org/search/?search=CIDP
--- CVID: https://connect.mayoclinic.org/search/discussions/?search=CVID

Hope this helps.

sb4ca | @sb4ca | Jul 3, 2023

In reply to @johnbishop "Hello @sb4ca, There isn't a separate support group for CIDP or CVID but there are other..." + (show)

Thank you. Both conditions are rare

edva1943 | @edva1943 | Jul 4, 2023

In reply to @sb4ca "Looking for others with this disorder. My neurologist has said my balance is being effected and..." + (show)

Was diagnosed with CIDPr four years ago. It was progressive (for over 30 years), and Dr. said I was likely to end up in a wheelchair, unless treatment was successful. He recommended IVIG, which has been very helpful. Has been some improvement in balance and strength. Most important, it's not getting worse.

tennis123 | @tennis123 | Jul 13, 2023

Hi, I have many of the symptoms of CIDP but no diagnosis. One I haven't really seen or heard about is facial tightness with twitching/shaking on movement such as when raising the eyebrows or in the corners of the mouth when moving my mouth. It feels like it takes more effort to make any sort of facial expression. Did anyone experience this?

sb4ca | @sb4ca | Jul 13, 2023

I didn't. I have large motor version which is different than small sensory neuropathy. Have you considered something like scleroderma? Do you feel skin tightening anywhere else? Have you ever tested positive for autoimmunity?
https://www.mayoclinic.org/diseases-conditions/scleroderma/symptoms-causes/syc-20351952

harley22 | @harley22 | Jul 14, 2023

I have had several rounds of IVIG infusions,every 3 weeks x2 days at home.
First time it was for 6 mos, and I felt no difference in my symptoms.
Again starting 2022 I did another 7-8 mos of IVIG every 3 weeks x 2days in a row and again it did not help my numbness,tingling and nerve pain so my neurologist decided we should stop it.

sb4ca | @sb4ca | Jul 14, 2023

And a plexitis has been ruled out.? I got brachial plexitis and had a neuropathy. My cousin had a nerve entrapment in his arm that took forever to get diagnosed. I believe a vascular surgeon found it. And cervical spine pathology as well?