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?

Liked by jazzy27, tjp4

@colleenyoung

Welcome new members @gratefulone @jazzy27 @lindy1956 and @suziep. I invite you to join this discussion about CIDP (chronic inflammatory demylenating polyneuropathy).
Why don’t you start by telling us a little bit about yourself.

Beverly (@bburleson1) and Don (@dlcutler): How are you doing? Don, what did you find out from your visit at Mayo? Beverly, what did you learn about stem cell therapy for CIDP?

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i went Mayo twice. They are excellent but see you one time My neurologist diagnosed me 1-11. I started with symptoms 4-06. PLS is VERY DIFFICULT TO DIAGNOSE. I would rely on your neurologist, maybe it is too soon to diagnose you. Symptoms will tell the story over time.

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What do members take for daily pain relief to manage the Pain of burning tingling numbness and any else that the pain of CIDP causes. I get infusions weekly. I am tapering off Prednisones I take Gabapentin CellCept and Cymbalta and supplements that generate nerve reproduction. Any ideas and getting comfortable day in and day out.

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Hi @jutty, I add my welcome. As @johnbishop suggested, I moved your message to this discussion about CIDP so you can meet others talking about symptom management. Please click VIEW & REPLY in the email notification to read all the past messages and get to know other Connect members with CIDP.

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I was just diagnosed with CIDP but not GBS. I undwerstand they're related but what's point of linking GBS to CIDP?

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I do and I've had it for about 16 years. it progressed very slowly over the years, but it has really accelerated for the past two years. Maybe age has something to do with it – I just turned 85 this month. But I was always a healthy, active athlete even in my senior years. I was adopted as a baby, so I know nothing of my family history. I had IVIG infusions for many years to keep the CIDP in check, but it became ineffective a year or so ago. So for the last 7 months I've had Plasmapheresis two days a month which seems to help somewhat. But it persists. I've been diagnosed with foot drop in both my legs, the right being the most debilitated. Consequently I have to wear a leg brace to maintain a normal gait. Fatigue is a constant. If it weren't for my pain medication and a prescribed stimulant and lots of caffeine, I probably couldn't function very well. I live alone, and can drive and manage on my own, but for how long is anybody's guess.
This is my first time to post on this site and I guess it's much longer than it should be, but I'm hopeful I can get a lot of feedback from other members who are suffering from CIDP.

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@jutty

What do members take for daily pain relief to manage the Pain of burning tingling numbness and any else that the pain of CIDP causes. I get infusions weekly. I am tapering off Prednisones I take Gabapentin CellCept and Cymbalta and supplements that generate nerve reproduction. Any ideas and getting comfortable day in and day out.

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I've been taking 100 mg of Ultram twice a day for years, and it had always eased any discomfort I might have had.. But lately it's been causing fogginess in the a.m., probably because it's not compatible with some other medication I'm taking.

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my son….46 years old…fighting it for 18 years…can't walk…ivig transfusion every 14 days……any ideas to help?

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@kruppm

my son….46 years old…fighting it for 18 years…can't walk…ivig transfusion every 14 days……any ideas to help?

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Hello @jgk85 and @kruppm — welcome to Mayo Connect. I don't have Chronic inflammatory demyelinating polyneuropathy (CIDP) but do have small fiber peripheral neuropathy (SFPN). I only have the numbness with my SFPN so there are no medications/drugs that help me. I do take a regimen of supplement to help (hopefully) with the nerve repair/regeneration.

I am tagging other members who have posted in other CIDP discussions to see if they can offer suggestions for you. @gratefulone @jazzy27 @lindy1956 @suziep @mllucas @ginifuller @captnick @kdp3186 @5134177246 do you have any suggestions for @jgk85 and @kruppm ?

@jgk85 I see that you have been battling CIDP for a long time. Thank you for sharing what helps you and more. I'm hoping others will be able learn from you and share what they have learned also.

@kruppm thank you for being an advocate for your son. I'm sure it's not easy for him. There is a post by @jazzy27 earlier in the discussion about the use of another medication for lymphoma which mentions that it cured his CIDP. Here is the link in case you are not able to find it.

https://connect.mayoclinic.org/comment/99972/bookmark/?ajax_hook=action&_wpnonce=9f91777e48

If you want to ask a specific member a question just tag them with their @username and ask your question. That way they will receive an email notification and a link back to your post.

John

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correct, I had previously been diagnosed with Lymphoma and CIDP and when I took my treatment of Rituximab for the Lymphoma it also treated the CIDP at the same time and the CIDP symptoms were gone in 2 months

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@johnbishop

Hello @jgk85 and @kruppm — welcome to Mayo Connect. I don't have Chronic inflammatory demyelinating polyneuropathy (CIDP) but do have small fiber peripheral neuropathy (SFPN). I only have the numbness with my SFPN so there are no medications/drugs that help me. I do take a regimen of supplement to help (hopefully) with the nerve repair/regeneration.

I am tagging other members who have posted in other CIDP discussions to see if they can offer suggestions for you. @gratefulone @jazzy27 @lindy1956 @suziep @mllucas @ginifuller @captnick @kdp3186 @5134177246 do you have any suggestions for @jgk85 and @kruppm ?

@jgk85 I see that you have been battling CIDP for a long time. Thank you for sharing what helps you and more. I'm hoping others will be able learn from you and share what they have learned also.

@kruppm thank you for being an advocate for your son. I'm sure it's not easy for him. There is a post by @jazzy27 earlier in the discussion about the use of another medication for lymphoma which mentions that it cured his CIDP. Here is the link in case you are not able to find it.

https://connect.mayoclinic.org/comment/99972/bookmark/?ajax_hook=action&_wpnonce=9f91777e48

If you want to ask a specific member a question just tag them with their @username and ask your question. That way they will receive an email notification and a link back to your post.

John

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I've had CIDP for 4yrs now. I go to the University of Minnesots to Drs. Now last Wednesday they tell me I may not have CIDP. i've been getting IVIG for 4 yrs every 2 to 3 week and Steroids by IV for the last 4 months they don't like the way the nerve's are demyelinating. Only thing is they still haven't told me what it could be The Dr. i'm seeing is suppose to be one of the Universities best in the field of Neuropathies. I don't know where to turn I've had a bad experience with the mayo years ago. So you can see I'm not ready to jump on the mayo band wagon right yet. I was a guinea pig for them back in 1988 when they where doing Roux-en-Y stomach surgery sure I lost 150 lbs but they just dropped all of us never followed up with any of us after we were done with the basics not a word never told us we should be taking certain vitamins or supplements which I feel they should have at least sent a letter to expatients.

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I'm not sure if I have CIDP or not go and read my post on Jazzy27 from mayor47

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Yes. It is clearly not as rare as U think!

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Hello @mayor47 and @vander626, I would like to welcome you both to Connect and thank you for sharing.

@mayor47 I am sorry you had a bad experience with a Mayo Clinic Roux-en-Y stomach surgery in 1988 even though you seem satisfied with the outcome of losing 150 pounds which sounds great to me. May I ask if this was part of a Mayo Clinic health study?

The reason I ask is that I have been involved in two different Mayo Clinic heart studies, one of which helped further define that I had hypertension and changed what I was taking for high blood pressure. In both studies I had a sit down with the researchers assistant and they went over all the fine details about what would happen and I have never been contacted. I never expected them to follow up with me as it wasn't one of the things they said they would do after the conclusion of the study.

You mentioned you are being treated by the University of Minnesota doctors. You may be interested in our next meeting of the Minnesota Neuropathy Association — Thursday, October 25, 3:00 pm — Presenter: Dr Walk, M.D. of the University of Minnesota – Professor and Head of the Neuromuscular Division of the Department of Neurology. Directions are on our website – http://neuropathy-mn.org/.

@mayor47 and @vander626 are you able to share any suggestions on what you are doing for treatment or what helps with your CIDP?

John

Liked by Jamie Olson

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Over the last 30 years, I have been diagnosed with and treated for chronic fatigue, fibromyalgia, Lyme, Barbesia, Parkinson's, small fiber neuropathy and. CIDP. I have all of the above except for Parkinson's. It's been a long journey from doctor to doctor. The CIDP and small fiber neuropathy have been the most challenging because I am weakening. I have done detoxing with the help of a nutritionist and am working out. I feel better have more energy but pain is increasing dispute 2 1/2 years of IVIG. CBD helps take the edge off. You can buy tincture of CBD oil from Green Roads online.

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I have it. I began having balance issues and falling ‘out of the blue ‘ in the fall of 2017. A few months later, it was getting worse. I was scared it was something related to my terrible Fibromyalgia which I’ve had for over 20 years. My PCP ran tests and decided to send me to a neurologist in early 2018. He ran EMG testing and stuck my left leg with needles. He mumbled something about CIDP as he left the examination room. My Doctor’s office couldn’t make sense of his notes or through a phone call to him. So 6 vials of blood were drawn, and I was sent to Dr Melanie Taylor in Grand Rapids MI. She redid the EMG tests herself and went to analyze the results. She told me my blood tests showed an autoimmune marker. Her analysis of the tests she performed plus the blood tests made her 99.8% sure I had CIDP. She somewhat explained it (or I couldn’t process it). It is very rare, 3-8 out of 100,000 people have it. How was it explained to you as far as what it does to the body??

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