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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: 17 hours ago | Replies (2924)Comment receiving replies
I haven’t posted in awhile deciding to wait until I’d progressed further with my visits at Mayo which started two weeks ago. For those of you who knew I was going, just know I’ll post more when I know more.
But I wanted to weigh in briefly on some of the recent posts about scams and the Protocol group.
It seems that John and other MayoConnect mentors wouldn’t be recommending treatments such as The Protocol or Myofacial etc if there wasn't evidence behind the treatments, albeit somewhat anecdotal.
After all their names are associated with Mayo Clinic, which has its ethical and medical reputation behind this blog site.
We all have to make our own choices about what to try and not, and yes it’s exhausting and can be very disappointing. But the value of a blog like this is to share information and learn options (conventional and unconventional) that our “regular” docs might not know or support yet.
Let’s keep trying and sharing and give our docs the good feedback so they can get on board. Maybe eventually they’ll be able to push the insurance companies in the right direction too. 😉
Replies to "I haven’t posted in awhile deciding to wait until I’d progressed further with my visits at..."
A few years after being diagnosed with pn, I went past tingles and numbness and developed toe aches at night. I started taking R Alpha Lipoic Acid nightly and that aching disappeared. Feet and hands still warm and tingly. I have a patch of about 4"x 10' on my upper leg which was numb, then itchy, then burned and finally graduated to what I would imagine a cattle prod feels like. Made me say ouch out loud. I started with Myofacial Release treatment and, wow, that pain disappeared immediately. It's now been a couple of months and I'm starting to have twinges and will have another treatment. I was very excited that it worked so well. The therapist really seemed to know what she was doing and explained it to me as she went along (it is odd). And, also, Medicare paid for it! I had a Morton's Neuroma years ago - is there maybe some connection with pn? I find this forum to be very helpful. Thanks everyone. Susan
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@margottaylor, First and foremost, thank you for checking in about your November Mayo visit. I know it is often more challenging to wait without knowing than it is to deal with the outcomes. It is wonderful that you want to share your information with Connect members so that all may benefit. Knowledge is power, especially as we deal with many roads to travel on what for many of us, is a new and bewildering journey.
Secondly, thank you for the cogent manner in which you reiterated the mission guidelines that every mentor and moderator are committed to maintaining in their efforts to support and foster quality of life for members. May you have a day of comfort and ease. Chris