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Living with Neuropathy - Welcome to the group

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

I was diagnosed with PN about six years ago--slight tingling of the feet. Cause was alcohol consumption which I believe was an easy diagnosis. Have had several EMP's and MRI's over the years showing a continuing deterioration of the nerves in my legs. No pain but loss of balance and strength. PT has helped a bit but have seen a greater loss in feeling this last year. Have been looking into HBOT therapy, PRP and stem cell therapy but neither are covered by medicare and clinics I have talked to offer treatments but at a huge cost. Has anyone had any success with these or other therapies and if so where? The lack of mobility has curtailed my ability to do much these days. I am 77 yrs. Any info would be appreciated.

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Replies to "I was diagnosed with PN about six years ago--slight tingling of the feet. Cause was alcohol..."
John, Volunteer Mentor | @johnbishop | Nov 13, 2018

Hello @johnnyb, welcome to Connect. I was diagnosed with idiopathic small fiber PN 2 years ago but I've actually had it for well over 20 years. I just didn't pursue it because they told me up front that if it is nerve damage they can't do anything to fix it. I only have the numbness with my PN. I don't know much about HBOT therapy for PN but there is other information about the therapy on Mayo Clinic's website here:

-- https://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/about/pac-20394380

I have no medical training or background and as much hope as I think stem cell therapy holds for neuropathy I have found no evidence of successfully treating PN with stem cell therapy. There are also no clinical trials for stem cell therapy for treating neuropathy as far as I know. We had a guest speaker on stem cell treatment at the Minnesota Neuropathy Association this past August who discussed it in details. I attached my notes from the meeting along with some links to references the speaker made.

There are a lot of people making money off of those of us with neuropathy looking for the magic cure. Here are some of the sites I use when trying to verify whether something is not a scam.

Quazar's guidance about avoiding scams and snake oil cures
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
-- https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions

I take supplements which helps me but it is by no means a cure. You can read my story in an earlier post here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Here are some member posts on Low Level Laser Therapy:

@swiss
-- https://connect.mayoclinic.org/discussion/in-search-of-relief/?pg=1#comment-130717

@holhealthcare
Can Low-Level Laser Therapy Have An Impact For Small Fiber Neuropathy?
-- https://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

@johnnyb are you able to do any exercise that helps with your mobility?

John

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18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes.pdf)

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