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.

@ecraig1414

Feet feel numb especially in the evening.

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Welcome @ecraig1414, You are definitely not alone with numb feet. Here's a search results link to all of the discussions and comments by members with numb feet - https://connect.mayoclinic.org/search/discussions/?search=numb%20feet.

Have you been diagnosed with neuropathy?

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My husband was hospitalized 158 days due to Covid. He has several lingering issues but the neuropathy in his hands and feet is the worst. We have tried every supplement recommended for neuropathy and none of them have helped.

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@swc828

My husband was hospitalized 158 days due to Covid. He has several lingering issues but the neuropathy in his hands and feet is the worst. We have tried every supplement recommended for neuropathy and none of them have helped.

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Welcome @swc828, I'm sorry to hear your husband still has lingering issues from Covid including neuropathy in his hands and feet. He's not alone with the side effects. Quite a few other members have shared their neuropathy symptoms following Covid. Here's a link to the comments and discussions - https://connect.mayoclinic.org/search/?search=neuropathy+from+covid.

The Foundation for Peripheral Neuropathy also has some related articles and webinars on the topic here - https://www.foundationforpn.org/?s=neuropathy+from+covid. Have you seen the list of complementary and alternative treatments for neuropathy listed on the Foundation for Peripheral Neuropathy's website? - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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What works and what are scams? How can one tell?
For example, is Nervo Vive, Nooro, etc really helpful or just other grand standing adds to lure you to spend $$$$? Has any one tried them? And have anything worked for you?

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In reply to @kidnurse1 "Pudendal pain" + (show)
@kidnurse1

Pudendal pain

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Burning pain from my knees down thru my feet.

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@bigjohnscho

Surely some people have found something that has helped with this awful disease. It would be so encouraging to here from anyone who could offer hope. It would even help to hear about those who have tried so called cures that have failed, at least that would warn others not to waste their money. I for one cannot just give in.

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After suffering stabbing pain for years and getting little help, I attended a seminar regarding "Stem Cell Therapy." At the seminar, there were a lot of near guarantees of how great these Stem Cell injections have been for people who were suffering from Neuropathy. Even the person who presented the seminar had a story of how he was cured from a near bedridden state from being a Bull Rider to a complete recovery!!??? All of us attending, who were suffering ate that story like apple pie! A 95% cure rate was also on the brochure. I bit and went to the Regeneration Clinic for my "Trial test" and told by Dr. Jamison that indeed I had Neuropathy (Which I already knew!) I had. I believed in the 95% cure. However, the cost was $10K and sadly it did not work! Buyer beware!!! $10K is a lot of money to lose for a working man!!

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@3887766

After suffering stabbing pain for years and getting little help, I attended a seminar regarding "Stem Cell Therapy." At the seminar, there were a lot of near guarantees of how great these Stem Cell injections have been for people who were suffering from Neuropathy. Even the person who presented the seminar had a story of how he was cured from a near bedridden state from being a Bull Rider to a complete recovery!!??? All of us attending, who were suffering ate that story like apple pie! A 95% cure rate was also on the brochure. I bit and went to the Regeneration Clinic for my "Trial test" and told by Dr. Jamison that indeed I had Neuropathy (Which I already knew!) I had. I believed in the 95% cure. However, the cost was $10K and sadly it did not work! Buyer beware!!! $10K is a lot of money to lose for a working man!!

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It is borderline criminal for all these scammers to prey on us who are suffering from intense pain. I almost fell for one that involved decompression therapy. The chiropractor sent me for a CT scan which, according to him, showed all kinds of bulging and herniated discs(even though my MRI did not show anything like that). Of course, the treatments were not covered by insurance. $9000+ with easy monthly payments. Luckily, I said I needed to go home and think about it. A cooler head said "NO". This is how most of these scams work. Please, everyone, don't fall for such things.

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@heisenberg34

It is borderline criminal for all these scammers to prey on us who are suffering from intense pain. I almost fell for one that involved decompression therapy. The chiropractor sent me for a CT scan which, according to him, showed all kinds of bulging and herniated discs(even though my MRI did not show anything like that). Of course, the treatments were not covered by insurance. $9000+ with easy monthly payments. Luckily, I said I needed to go home and think about it. A cooler head said "NO". This is how most of these scams work. Please, everyone, don't fall for such things.

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The stem cell clinics were popping up left and right 5 or 6 years ago and the FDA put out some warnings but I guess they are coming back for round two. Two bad they don't get more negative press.

-- FDA acts to remove unproven, potentially harmful treatment used in ‘stem cell’ centers targeting vulnerable patients: https://www.fda.gov/news-events/press-announcements/fda-acts-remove-unproven-potentially-harmful-treatment-used-stem-cell-centers-targeting-vulnerable
-- FDA warns US Stem Cell Clinic of significant deviations: https://www.fda.gov/news-events/press-announcements/fda-warns-us-stem-cell-clinic-significant-deviations

Maybe consumers with a bad experience should report them to the FDA?
-- Consumer Alert on Regenerative Medicine Products Including Stem Cells and Exosomes: https://www.fda.gov/vaccines-blood-biologics/consumers-biologics/consumer-alert-regenerative-medicine-products-including-stem-cells-and-exosomes

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@3887766

After suffering stabbing pain for years and getting little help, I attended a seminar regarding "Stem Cell Therapy." At the seminar, there were a lot of near guarantees of how great these Stem Cell injections have been for people who were suffering from Neuropathy. Even the person who presented the seminar had a story of how he was cured from a near bedridden state from being a Bull Rider to a complete recovery!!??? All of us attending, who were suffering ate that story like apple pie! A 95% cure rate was also on the brochure. I bit and went to the Regeneration Clinic for my "Trial test" and told by Dr. Jamison that indeed I had Neuropathy (Which I already knew!) I had. I believed in the 95% cure. However, the cost was $10K and sadly it did not work! Buyer beware!!! $10K is a lot of money to lose for a working man!!

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I basically did the same. My scammer took me for 9,900 bucks. Still have all the problems, but a lighter wallet.

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I give up, why aren’t criminal charges brought up against these scammers. Theft by deception is a crime. And that’s what these scammers are doing.

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