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Colleen Young, Connect Director avatar

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 4 hours ago | Replies (6995)

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Profile picture for John, Volunteer Mentor @johnbishop

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/

Here are some member posts on Low Level Laser Therapy:

@swiss
-- https://connect.mayoclinic.org/discussion/in-search-of-relief/

@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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Replies to "Hello @johnnyb, welcome to Connect. I was diagnosed with idiopathic small fiber PN 2 years ago..."

Thank you fo the reply and information source.
I have asked once before and did not have any responses about PRP or Prolotherapy. Are there any information sources regarding this procedure and more important doe it work?
Thanks again and most appreciative about the information you provided.
Fred

@johnbishop

I am Ken Lasbury with peripheral neuropathy idiopathic and numbness only, in a walker although I was riding 10 miles a day on my bike months ago for years but I fell too often getting on and off the bike. I am no longer riding.

A year ago I underwent stem cell injections two times and spent $20,000 without benefit. I have now begun hyperbaric therapy and have paid for 20 sessions for the next month. I have completed four sessions and my condition is worse although I read that it can happen and temporarily. I am also at a point where I am installing ramps for a wheelchair. I am 78 years old and a former executive at Scripps Research and UCLA school of medicine. Hbot is a wild card but I’m willing to try anything at this point. I’m looking for advice.