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.

I have only good feelings about LDN. I’ve been on it for a 15 months and have had no side effects.
After a few weeks after starting LDN, my pain has been reduced to practically “0”.
However, numbness continues ~ hoping for progress in that area.
Bruce

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My pulmonologist suggested I take Gabapentin, so my primary doctor prescribed this for me. I am up to 2400mg per day. It helps but I still have difficulty with the pins and heat and worn-out stuff but at about a 5 rather than a 10+.
So, I stumbled upon this pill and am just beginning to research. Take it away if you have a say! Thanks and cheers from Jill

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@jillchristline

My pulmonologist suggested I take Gabapentin, so my primary doctor prescribed this for me. I am up to 2400mg per day. It helps but I still have difficulty with the pins and heat and worn-out stuff but at about a 5 rather than a 10+.
So, I stumbled upon this pill and am just beginning to research. Take it away if you have a say! Thanks and cheers from Jill

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I haven’t tried it, but reading the reviews on Amazon, more people said it did nothing for them than those who liked it. Gabapentin, however, not only did not work for me, but also started shutting down my kidneys. I was comatose by the time my husband got me to the hospital. All that was required to get me back to normal was to discontinue the drug and get me hydrated again.

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@jillchristline

My pulmonologist suggested I take Gabapentin, so my primary doctor prescribed this for me. I am up to 2400mg per day. It helps but I still have difficulty with the pins and heat and worn-out stuff but at about a 5 rather than a 10+.
So, I stumbled upon this pill and am just beginning to research. Take it away if you have a say! Thanks and cheers from Jill

Jump to this post

Hi @jillchristline, 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.

I moved your question regarding Nerve Shield to this related discussion in order to not create a repeat scenario:
- Neuropathy: What works and what are scams?: https://connect.mayoclinic.org/discussion/what-works-and-what-are-scams/. @jevancar posed that same question and had their discussion moved to this discussion as well.

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

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I have diabetic neuropathy in my feet and before I took any prescription drugs I tried Nerve Control 911 and it worked, for a while. When the neuropathy got worse I got a prescription for cyclobenzaphine, 5mg. It stopped the electric shock type pain I was experiencing. Later on I began to have burning toes at night. Really severe. The doctor gave me pregabalin 25mg. That stopped the burning however the skin on my toes peeled off and left open sores on 4 of my toes. I continue to take all three pills as I’m afraid to quit for fear the pain, electric shock and burning will come back. Tomorrow I have my first appointment with a neurologist. It’s taken me over a year to get an appointment. I’m anxious to hear what she has to say.

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Hello! I have taken Oxcarbezaprine 4x a day, Gabapentin 2x a day and I have a spinal implant.
All of that lets me at least control it mostly, but my thinking and life have been severely affected.

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I have had SFN for 15 years and been looking for relief everywhere. The best I’ve found for pain is LDN ~Low Dose naltrexone but I have found absolutely nothing for numbness & presently I am at the end of my rope.
A friend just suggested looking into Hyperbaric Oxygen Therapy for Chronic Neuropathic Pain.
I just found this ~ Hyperbaric Oxygen Therapy (HBOT) is an effective treatment for neuropathy. By driving oxygen deep into tissues, it reduces cell death and pain symptoms. Hyperbaric oxygen also stimulates the growth of new blood vessels, enabling the body to increase effective oxygen and nutrient delivery.
Has anyone had experience with this? Please let me know.
Thanks.
BTS

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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.

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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?

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