Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2 6:09am

I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.
What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@daves2

Under scams Anyone tried nooro ultimate foot massager SCAM?Anyone tried the nooro ultimate foot massager they claim it works wonders Been trying it for 5 days now nothing so far 15minutes a day twice.

Jump to this post

I tried the nooro foot massager and the first one really helped my foot until it quit working so I reached out to the company with no response and then one day out of the blue another foot massager came in the mail and that one only worked for about 2 hours, and I’ve had no response from the company whatsoever even after contacting them several times with pictures.

REPLY
@bigjohnscho

Is Pirenzepine approved in the USA. Has anyone tried it and what were the results. I’ve read quite a lot about it and it seems to be the first medication that offers a cure.

Jump to this post

My understanding is no. See: https://connect.mayoclinic.org/discussion/stage-2-trials-of-pirenzepine-for-neuropathy/

This is also the reason that Stage 3 trials are on hold as it became to expensive to have to get the drug OK'ed vs. just getting the use for peripheral neuropathy approved.

REPLY

I take gabapentin and it doesn’t help anymore.

REPLY
@antonintampfl2009

This supplement has ingredients that supposedly help regenerate damaged nerves and include folic acid, alpha lipoic acid, lions mane mushroom, vit B6 &B12, Benfotiamine, etc.? And if so has it done some good?

Jump to this post

I too am interested in finding out more about this for my mother.

REPLY
@bambacotton1

I take gabapentin and it doesn’t help anymore.

Jump to this post

What did it do, I take it, it like drinking a glass of water, doesn't relieve pain, so what's the purpose.

REPLY
@alfonzatsu52

What did it do, I take it, it like drinking a glass of water, doesn't relieve pain, so what's the purpose.

Jump to this post

Hi bambacotton1: I don't know what gabapentin does for you; for me it improves the quality of my sleep several fold. I sleep peacefully and deeply when I take it, when I don't take it (understanding that I taper off of it) my sleep is poor, interrupted, and I wake up early and can't get back to sleep. Without adequate restful sleep my days are pretty shot; it is hard to get anything done because I'm wanting more sleep. I can't concentrate, I have trouble planning and carrying out much of anything. My kids would tell me that I' m not good at "adulting."

REPLY
@antonintampfl2009

This supplement has ingredients that supposedly help regenerate damaged nerves and include folic acid, alpha lipoic acid, lions mane mushroom, vit B6 &B12, Benfotiamine, etc.? And if so has it done some good?

Jump to this post

I took them for 45 days,I really thought that this is what I was waiting for but instead of getting better 40 days in my pn was at the worst level ever. I stopped taking the supplement and my pain level was back to what it was before I started. That may not be the case for everyone. I am now looking into the scrambler ST-5A device and Axon therapy. When your a shark out of water your looking for a good place to land. I have tried a lot of supplements and I am still looking for the right place to land. The scrambler and axon look very promising to finally find something to cancel all that pain to the brain.
I hope you find some relief for your mom.

REPLY
@antonintampfl2009

This supplement has ingredients that supposedly help regenerate damaged nerves and include folic acid, alpha lipoic acid, lions mane mushroom, vit B6 &B12, Benfotiamine, etc.? And if so has it done some good?

Jump to this post

Hello @antonintampfl2009, @lbharris812 and @tofrazier, there was a discussion related to this product that had to be removed from the community discussions. It attracted resellers and spammers with fake testimonials about the product. Not the kind of activity Mayo Clinic Connect wishes to attract.

There are members who have shared their experience with the product in the following discussion:
- Neuropathy: What works and what are scams?: https://connect.mayoclinic.org/discussion/what-works-and-what-are-scams/

You may also be interested in this related discussion:
- Neuropathy pill: How to avoid scams?: https://connect.mayoclinic.org/discussion/neuropathy-pill/

You might find the following information on the Foundation for Peripheral Neuropathy helpful in your search for something that provides relief for neuropathy symptoms - https://www.foundationforpn.org/living-well/

REPLY

Gabapentin does nothing for me.My pain gets so bad I can’t stand it.

REPLY

I have just started (June 15) taking 2.4g Cat's Claw with 2700mg of Gabapentin for my PN. I take one 900mg Gabapentin and two 2 Cat's Claw twice a day. Then one 900mg Gabapentin and one Cat's Claw once a day.

Gabapentin helps. I wouldn't be able to do most activities without it. It helps me to "push through the burn". I have been painting pictures on my walls and gardening. I plan to bow hunt. Driving is better but my left leg gets burning sore after a bit. It does just sitting after a bit.

Let's see what Cat's Claw will do to help. Has anyone tried Cat's Claw?

REPLY
Please sign in or register to post a reply.