Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2, 2024

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.

@valyruss

https://www.rstsanexas.com/
It's a NeoGen treatment for neuropathy using electrical pulse and oscillators plus B12 injection straight in feet...
Most ins. don't pay for it...
click on them website and find out a local providers in your area doing this treatment...
The local provider will do a thoroughly evaluation to see if you are a good candidate...
I got three month-twice/week treatment plus some other lifestyle adjustments and I'm 70% healed with my SFN.
Good thing-my local provider gave me a very good price to continue as a maintenance only for twice/month...

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I will check out their website. Thank you so much for your help.

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@valyruss

Glad your husband feel better with special shoes and Gababentin....
Unfortunately, the relief will not last long,,,unless properly treated neuropathy becomes worse and worse till prevent people even from walking...
First thing first you have to determine what is causing this neuropathy...a neurologist and a podiatrist is a must to see...they will check nerves conduction, arteries and venous blood flow, skin biopsy for small fiber neuropathy ( SFN) etc...
I got SFN three years ago, being on Gababentin and bunch of helpful vitamins to no avail....I've got to the point when walking became difficult. Finally I ended up with this clinic doing Sanexas treatment together with B12 shots straight in my feet along with some other life style changes..Sure enough, after three month treatment twice a week I got 70% healed, off Gababentin and walking with ease....I'm continuing to do Sanexas just for maintenance twice a month...Hope this help.

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SANEXAS?

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I have had peripheral neuropathy (non-diabetic) for over 30 years. MS was ruled out after 10 years. A Dr. prescribed a high dose of gabapentin, which has made the pain somewhat manageable. I have pain in both hands and feet. I am now researching electrical stimulation massages, like Nooro, to see if it is worth purchasing. I'm still researching this.

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I am researching electric stimulation massage, like Nooro, that is supposed to relieve neuropathy foot pain. Has anyone tried this? I have had non-diabetic peripheral in hands and feet for over 30 years and have been on a gabapentin high dose, 3000 mg daily, for 20 years. I don't know what I'd do without it. Yet, I worry about using it forever and would love to be able to walk more than 2 miles and ride a bike. Has anyone tried Nooro, or the like?

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@kjharbert

I am researching electric stimulation massage, like Nooro, that is supposed to relieve neuropathy foot pain. Has anyone tried this? I have had non-diabetic peripheral in hands and feet for over 30 years and have been on a gabapentin high dose, 3000 mg daily, for 20 years. I don't know what I'd do without it. Yet, I worry about using it forever and would love to be able to walk more than 2 miles and ride a bike. Has anyone tried Nooro, or the like?

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Hello @kjharbert, Welcome to Connect. There are members who have shared their experience with the Nooro device. You might want to scan through the discussions and comments by members on Nooro. Here's a link to the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=nooro.

If you haven't already seen it, The Foundation for Peripheral Neuropathy has some helpful information for those of us with neuropathy:
-- Living Well with Neuropathy: https://www.foundationforpn.org/living-well/
-- Complementary and alternative treatments: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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Anyone have success with Tamarack

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@sh0rtie Gabapintin did nothing for me. I took it for two years. I have just started taking Alpha Lipoic Acid at 600mg. I think it is helping a little and sometimes I can feel sensations in my toes. I also use leg massagers - the ones you put your legs in. Mine has three different programs and I go through all three every time I use it. That seems to help also. Good luck Laura Henderson

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@kjharbert

I am researching electric stimulation massage, like Nooro, that is supposed to relieve neuropathy foot pain. Has anyone tried this? I have had non-diabetic peripheral in hands and feet for over 30 years and have been on a gabapentin high dose, 3000 mg daily, for 20 years. I don't know what I'd do without it. Yet, I worry about using it forever and would love to be able to walk more than 2 miles and ride a bike. Has anyone tried Nooro, or the like?

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Yes, I tried Nooro. I have little or no pain. Just numbness and tingling and restless and heavy legs. I use a rolling walker for balance. Physical therapy is good for the balance and strengthening the core. Nooro did nothing, I tried Electronic Stimulation- zip. I was given gabapentin, made me dizzy and I really did not have pain. My Ideopathic neuropathy started some years ago while I was still workimg. It was slow at first. That was over 20 years ago. NOw it is up to the knees and starting in the fingers,

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@jakedduck1

@bigjohnscho
How many members on connect have you seen post a cure or even significant improvements?
But even if they did it doesn't guarantee you will receive the same results. Personally, I never bought into all the supplement, devices or clinic hype.
I also have epilepsy, neither neuropathy or epilepsy have a cure. I’ve acceped my diagnosis and there limitations and adjusted my lifestyle accordingly. I've had neuropathy for almost 40 years. As the condition progressed my pain eventually stopped, replaced by numbness and other complications. Looking back, the pain wasn't so bad after all.
Sadly many people choose to chase rainbows and end up disappointed and perpetuating the booming fraud market, making crooks richer.
Epilepsy medication has proven to be the most helpful. I have taken these horrible meds for nearly 60 years and none have helped my neuropathy and for 45 years didn't help my seizures either. However, my brother takes 3600 mg of gabapentin and it helps him some.
ALA as I understand it is more likely to help people with diabetic neuropathy. Supposedly it has something to do with insulin but ALA studies for other sufferers has shown little to no effect. Although, ALA given intravenously has a higher success rate.
If you choose to to shop on Amazon for a cure, think about this.
Research showed that in March 2019, there were 1.8 million new unverified reviews, with an average of 99.6% of them being 5-star reviews. Most of these reviews are from people paid to write them.
I hope you don't go broke searching for the elusive cure researchers all over the world have yet to find.
If start supplements, Id ask my doctor and pharmacist about them first.
You might want to check out The Peripheral Neuropathy site for potential treatment possibilities.
https://www.foundationforpn.org/
IF IT SOUNDS TOO GOOD TO BE TRUE, IT PROBABLY IS.

Jake

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There was One Amazon thing that I ordered, which didn’t even work and I returned. The company offered me $50 to give it a good review.

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@debralucas059

I take a supplement by Immunovites called NA R-Alpha Lipoic Acid 600mg USP. I searched and found this on YouTube from the Nerve Doctors. I know how neuropathy feels like and this works for me. I bought it from Amazon or Walmart. It works great!! I hope it helps you.

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Does this relieve your pain? Can you take short walks without pain? I've been on the NA ALA for 6 days. The same supplement as yours. I buy mine at Amazon. I was on 600mg of the R ALA specialized for 237 days but the pain still lingered. So I'm really hoping this N ALA will work.

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