CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

It’s demyelinating not demyelination, spell check put it in wrong.

I had 3 years of monthly treatments and didn't see improvement until after a year. I'm now in remission and just have pain associated with neuropathy. Diet is extremely important in controlling the symptoms. Eliminate sugar, dairy, gluten, red meat. Eat lots of greens, enjoy green smoothies, drink lots of water. Good luck.

Hello, I do feel relief for about a week and by the time for my next infusion I'm so ready. I have had the initial week and 4 maintenance infusions. My doctor suspended the infusions because she thought there was an issue inhibiting my recovery. She referred me to a spine neurosurgeon and she was right. I have spinal damage and now will undergo a spianal myelogram to check how much damage there is. I'm sure I will go back on infusions after this issue is better diagnosed. Hang in because it can take weeks to months to feel better.

Good advice, wondering if alcohol is also a no-no?

I have a rare autoimmune neuromuscular disease that was diagnosed six years ago. Right now I am only treated with Gabapentin. I also have multiple fractures in my spine due to osteoporosis. I am in severe pain with the constant neuropathy and pain in my back. I have been treated by a pain clinic with many procedures and pain killers. My question is: has anyone ever been treated with ketamine for pain and if so,did it work?

Hello @txamo, Welcome to Mayo Clinic Connect. You will notice that we have moved your post to an existing discussion "CIDP (chronic inflammatory demylinating polyneuropathy)" so that you can meet other members with similar symptoms and learn what they have shared helps them. If you click the VIEW & REPLY button at the bottom of the email notification, it will take you to the discussion.

You may also be interested in the following related discussions:
- Ketamine for chronic pain: https://connect.mayoclinic.org/discussion/ketamine-for-chronic-pain/
- Ketamine Infusion: https://connect.mayoclinic.org/discussion/ketamine-infusion/

Have you been able to discuss ketamine as a possible treatment with your doctor or care team?

I was on IVIG for five years. Twice I was paralyzed from head to toe with CIDP. For the last 15 months of indusions I did not see any change in strength or pain. I also tried plasmapheresis and steroid infusion. I am baseline now. Walking with a walker. I have severe pain in my spine.

@txamo
My friend I am so sorry to hear of your terrible condition of CIPD. Please accept my deep feelings of sorrow for your suffering. May I ask what has led you to explore ketamine? I remember seeing a video by a doctor describing some of the benefits of it. I thought I had a link saved but cannot find it. Can you describe whether the gabapentin helps and what side effects you have from it. Have you tried other meds for pain? It would be interesting to hear more about your history with your illness; the more you can flesh out the more likely it would be that someone here might come up with some useful tidbit that perhaps might be helpful to you. I really can't imagine what utter despair a disease like this can cause one. I hope you have some good support people in your life. Best, Hank

@txamo
Here is the video I was looking for. Although the speaker is discussing using ketamine for Central Sensitization there is a lot of info in the video regarding what ketamine does, how it works. Maybe you'll find it interesting w.r.t. what info you are seeking:

@jesfactsmon This is a great video which offers an excellent breakdown of Central Pain Sensitization and Ketamine. I anticipate continued learning at Mayo's pain rehab program soon. Thanks for posting Hank!