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.

@bunky44

I can relate to most of these posts....PN is a life comfort stealer. It looks like there are so many reasons for this malady..some from surgeries, some from illnesses..or injuries. I'm looking for relief from whatever the cause could be..and not with more medications. The different kind of 'socks' looks to be helpful for some. I also feel that by using different non-invasive types of therapy whether it be acupuncture, inserts, better shoes....massage...cleaner diet....that some of these have worked wonders for so many that now suffer, that maybe it's time to try something different in our pursuit of comfort and relief from at times, the intractable , searing pains of PN. I recently talked with three women in a waiting room at my local hospital..when I noticed that they were all wearing Hoka shoes. They swore by them!! I am now dealing with pins and needles as well as extreme heel pain that causes me to walk on my toes..can't bear to put my heel down as the pain is too intense....and I'm an athlete!....not exercising..walking on my treadmill and outside is not an easy life sentence for me..so I'm always seeking out ways to lighten my load here.
Heat doesn't help me...but ice seems too..at least getting a bit numb is a different feeling then having to be conscious of my feet at every moment of the day. I also massage my feet a lot....getting more of a blood supply going...also taking supplements that aid in nerve damage, which have helped I feel. I would love to have anyone who's tried different walking shoes that have benefited their lives..please post for us!! What's making a difference??? Not satisfied with a "there's nothing that can be done" attitude! Bless you all!!!

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I LOVE my Hokas!

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What one drug/supplement would you choose as the best treatment for none diabetic peripheral neuropathy

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@bigjohnscho

What one drug/supplement would you choose as the best treatment for none diabetic peripheral neuropathy

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Wished it was that simple as only one drug/supplement being the best treatment for peripheral neuropathy. I'm no medical expert but it seems that there are a lot of different causes for neuropathy and no one treatment seems to help every possible cause. I think that is why there are so many different complementary and alternative treatments that have helped some folks but not everyone - https://www.foundationforpn.org/treatments/

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I am a lousy pill taker and I want advice on which capsules are smaller. The packaging is unhelpful. I am interested in Alpha lipoic aric and Carnitine. (Not the whole name.) Can anyone help?

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@1938altucci

I have had PN for 12 years. It began shortly after a rear end crash in my car, although at the time I also had symptoms of high blood sugar... not in the high, pre-diabetic range, but close enough for me to be concerned about working at lowering A1C and glucose. As I went about seeking cause and treatment, I have done all the usual things. This PN might be called "a blessing in disguise," for my overall health, as I have exercised more and have taken strict control over my diet. I have tried Gabapentin & Lyrica, with no improvement in my symptoms. I may have arrested the progress of my pain and numbness, which is now limited to my feet, toes, ankles, and lower legs and does not seem to be worsening or spreading. What I really want is to be sure that I have been tested for all possible causes. I have too often been discharge with the "idiopathic" "diagnosis." I idiopathic is NOT a diagnosis. It is an easy way for a doctor to say there is nothing that can be done. I need a 'point guard" who will take the trouble to coordinate the analysis of my blood tests, MRIs, and Xrays. I have this stubborn idea that there is a reason/cause for everything, if only a person with PN (or any condition, for that matter) will take the time and effort to not give up until the CAUSE is found. Any leads, both for solutions or dead ends, will be appreciated. I sound cynical, but it's really that I am totally frustrated with the time, effort, money, and anguish I have spent spent on the condition, with very little to show for it. Thanks!!!

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DITTO

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I would like to get a professional opinion on Nerve Shield Pro. It looks like a scam, but I want to b e sure.

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@mlee5309

I’m desperate enough to take anything regardless of studies if there is a chance at pain relief. Does it just enable you to sleep or does it actually reduce pain? Thc helps me to sleep but it doesn’t touch the pain it just somehow allows me to ignore it but only at night. Thc during the day does nothing for me. My neuropathy was from vitamin deficiencies. Thx for any response.

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GABA literature indicates it interupts the pain-to-brain pathway like the Pentins do. i cant tell otherwise but 300 MG at bedtime lasts thru the night.
I currently take three of the "Superior Source" 100 MG tablets nightly. They are "Micro Lingual" and dissolve rapidly beneath the tongue.
Good luck..

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@jevancar

I would like to get a professional opinion on Nerve Shield Pro. It looks like a scam, but I want to b e sure.

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Hi @jevancar, 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 atract.

I moved your question 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/

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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@jfn

Hi @norelle27 ,

Have you tried shock wave treatment? My calves were really tight, I can relate to the above, and Wow! What a difference. This relieved so much of the tension. I also do happy feet yoga, and I massage my feet every night. It was not an instant relief, but several months. The shock wave however... Life changing.

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I haven’t tried that or heard of it. It’s amazing how a lot of providers are not aware of different ( alternative options) I am biting the bullet and going to SCMU for Calmare ( Scrambler therapy) I am in such pain - bottom of feet and toes are on fire!

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