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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 3 days ago | Replies (5949)Comment receiving replies
Hi,
I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).
I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.
If anyone is interested please private message me.
Replies to "Hi, I'm not sure where exactly to put this post, but going to "Home" on websites..."
Hi.
I’m also looking for PN relief. I’m not sure how to get a group or talk time started, but I can suggest you research Mayofascial Release Therapy, or MFR. I’ve had bad neuropathy in my feet from a couple of failed back surgeries and developed CRPS which started this pain.
I’ve had 4 MFR treatments and it has given me a new lease on my life with 75-85 percent reduction in my pain. My pain started to go away after the first treatment!
Then you do self treatments on your own to help heal what ails. You have to put time in to get positive results.
It might not work for everyone but when I read about this on this discussion group, I soon tried the therapy and I go once a week and feel better after each session.
Good luck with this and your other suggestions on this post.
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Hello @arcticmark. If I may ask, are your replying to messages primarily by email on Connect? If so, may I suggest clicking on VIEW & REPLY. Connect is an online community where members post back and forth to one-another, so in a sense, they are already meeting online to chat. The various discussion topics you mentioned could be separate topics, but may also already exist in the Neuropathy group, https://connect.mayoclinic.org/group/neuropathy/. You may also notice that I changed your post to remove your email. This is done to protect your privacy as Mayo Clinic Connect is a public site and sharing your email could open you up to potential spammers.