Anyone been diagnosed with CIDP? It's very rare

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.

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

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

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

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.

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

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

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

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.

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??