1. < Neuropathy

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.

Mentor
John, Volunteer Mentor | @johnbishop | May 26 7:42am
In reply to @bigjohnscho "What one drug/supplement would you choose as the best treatment for none diabetic peripheral neuropathy" + (show)
@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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1 reply
suetex | @suetex | May 26 7:09pm

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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Wade | @przngard | May 28 9:29am
In reply to @1938altucci "I have had PN for 12 years. It began shortly after a rear end crash in..." + (show)
@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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jevancar | @jevancar | May 28 10:25am

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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2 replies
harryrcampbell37 | @harryrcampbell37 | May 28 10:31am
In reply to @mlee5309 "I’m desperate enough to take anything regardless of studies if there is a chance at pain..." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | May 28 12:49pm
In reply to @jevancar "I would like to get a professional opinion on Nerve Shield Pro. It looks like a..." + (show)
@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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norelle27 | @norelle27 | May 29 10:06am
In reply to @jfn "Hi @norelle27 , Have you tried shock wave treatment? My calves were really tight, I can..." + (show)
@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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norelle27 | @norelle27 | May 29 10:08am
In reply to @harley22 "I a relate. My feet hurt so bad on the sides,that I can’t walk sometimes Shoes..." + (show)
@harley22

I a relate.
My feet hurt so bad on the sides,that I can’t walk sometimes
Shoes are difficult to find, have tried Orthofeet and even they hurt after awhile.
I use Salonpas pain patches and CBD ointment for relief.
It doesn’t help alot, but it’s better than nothing.
Hope you get some relief

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Thank you - I am very upset that this affects my quality of life. I’m now out on short term disability- getting Scrambler therapy in 2 weeks - I pray it works

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1 reply
harley22 | @harley22 | May 29 11:07am
In reply to @norelle27 "Thank you - I am very upset that this affects my quality of life. I’m now..." + (show)
@norelle27

Thank you - I am very upset that this affects my quality of life. I’m now out on short term disability- getting Scrambler therapy in 2 weeks - I pray it works

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What is scrambler therapy?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 29 11:15am
In reply to @harley22 "What is scrambler therapy?" + (show)
@harley22

What is scrambler therapy?

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Here are a few discussions on the scrambler therapy if you want to learn what others have shared.
-- Has anyone tried Scrambler Therapy for neuropathy or for pain?: https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/
-- Hope: Starting Calmare scrambler therapy: https://connect.mayoclinic.org/discussion/hope-1/

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