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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@johnbishop

Hi Carrie @sherlock, welcome to Mayo Clinic Connect. I have small fiber PN but I only have the numbness and no pain. Thank you for sharing your post. There are a couple of discussions that you may want to read and connect with other members that share your symptoms.

Groups > Neuropathy > Anyone been diagnosed with CIDP? It's very rare
-- https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/
Groups > Neuropathy > Small Fiber Neuropathy
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/

You mentioned that your condition continues to worsen even with the IVIG treatments? Did your neurologist offer any other treatment suggestions?

I'm tagging @artscaping and @jenniferhunter who have discussed chronic pain in previous posts to see if they are able to share any suggestions for you.

John

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Replies to "Hi Carrie @sherlock, welcome to Mayo Clinic Connect. I have small fiber PN but I only..."

@sherlock I was looking up CIPD and ran across this link that talks about treatment and studies. Here is the link https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/ I wonder if regenerational medicine could help. That's just a guess as I don't know. With autoimmune issues, sometimes detoxing can help by removing something that your body is reacting to, but that would be a question for a functional medicine doctor. The environmental/functional medicine doctor who defined the field was Dr. Rea and here are his volumes written for doctors about what happens chemically within the body in chronic diseases. https://www.ehcd.com/reversibility-of-chronic-degenerative-disease-and-hypersensitivity/ You can also go to Dallas for treatment. This was information that I got from my environmental medicine doctor. I hope your Lyme disease is in remission and not actively attacking your body. I know oxygen levels in the body aid healing and help defeat some of the infections and boosting that may help. If you are not able to exercise to raise your levels, how about something like hyperbaric oxygen chambers, or using an oxygen concentration device? I'm not a doctor, but these would be questions you could ask about.