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.

aaron_az | @aaroncush | May 9 9:17am
In reply to @johnbishop "Hola @uaa, Welcome to Connect. I used Google translate (https://translate.google.com/) to translate your post to English..." + (show)
@johnbishop

Hola @uaa, Welcome to Connect. I used Google translate (https://translate.google.com/) to translate your post to English below.
----------
Hello
Does anyone know about the development of Winsantor, which as far as I know has developed a medication that not only stops neuropathy but also restores damaged nerves, that is, it has a reversible effector.
As far as I know, they are already in phase 3, for authorization and the latest information I have is that during the course of this year they will finish testing and offer the drug commercially.
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I don't think there have been any additional news for WinSantor's new drug according to their website - https://winsantor.com/pipeline/. I did find this news release from a pharmaceutical website.
--- Pirenzepine by Winsantor for HIV Related Neurological Diseases: Likelihood of Approval:
https://www.pharmaceutical-technology.com/data-insights/pirenzepine-winsantor-hiv-related-neurological-diseases-likelihood-of-approval/
Have you done any research on other treatments?

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The last thing I heard about WinSantor was they did not have the funding necessary to begin phase 3 trials.

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1 reply
jfn | @jfn | May 9 9:55am
In reply to @norelle27 "So I’m in the same boat - neuropathy in both feet, non-diabetic and continues to get..." + (show)
@norelle27

So I’m in the same boat - neuropathy in both feet, non-diabetic and continues to get worse.
I work on my feet and up to 8 hours. I have a terrible time finding shoes that fit( high arches, narrow feet and hammertoes …
Had foot surgery 10 years ago.
I have read very positive reviews about Calmare or “ Scrambler” therapy. Painless, non invasive and drug free. Developed by 2 Johns Hopkins doctors- approved by FDA. 15 years - I am desperate to find relief. My pain in concentrated in my toes and ball of foot. That’s it -
A lot of doctors ( my neurologist for one) have never heard of this therapy-
I refuse to take gabapentin but will give Lyrica a try -
Google Calmare therapy to find more information-
I had been active most of my life ( marathon runner)Amateur Soccer player and aerobics.
Initially my career required a certain heel height and that combined with cabin pressure just made my feet worse.
It’s intermittent pain.
I am desperate for relief-

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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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1 reply
davidlscott73 | @davidlscott73 | May 9 10:21am
In reply to @johnbishop "Welcome @davidlscott73, I am in complete agreement with you on sugar. I haven't been able to..." + (show)
@johnbishop

Welcome @davidlscott73, I am in complete agreement with you on sugar. I haven't been able to completely quit eating sugar but I have made a big dent in my old habits and it most definitely helps with how I feel during the day. It also made a difference in getting rid of some of that extra baggage around my midsection.

Do you mind sharing what brought you to Connect? Do you have questions on neuropathy or other conditions?

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Well, I have constant bad numbness in both feet with tingling but not pain. I assume that it was caused by alcoholism for about 15 years. I stopped 7 years ago but the neuropathy did not improve. Now im flooded with tons of advice from people to “cure” it and nothing has helped. So I’m careful and sought help here.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 9 10:53am
In reply to @uaa "Hola Alguien sabe del desarrollo de Winsantor que hasta donde conozco ha desarrollado un medicamento que..." + (show)
@uaa

Hola
Alguien sabe del desarrollo de Winsantor que hasta donde conozco ha desarrollado un medicamento que no solo detiene la neuropatia sino que restaura los nervios dañados o sea que tiene un efector reversible.
Hasta donde se, estan ya en la fase 3, para su autorizacion y la ultima informacion que tengo es que en el transcurso de este año terminarian de hacer sus pruebas y ofrecer el medicamento comercialmente

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Welcome, @uaa. I changed your language settings to Spanish so that you can read my English post in Spanish and your Spanish posts would be translated automatically for English speakers.

Read more about the language feature here:
- Traducción automática entre español e inglés / Automatic translation Spanish and English https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/nueva-funcin-traduccin-automtica-entre-espaol-e-ingls-new-feature-automatic-translation-between-spanish-and-english/

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paulbse | @paulbse | May 9 11:36am

Spinal Cord Implants for Peripheral Neuropathy: Has anyone had any experience (good or bad) with spinal cord stimulators? How well did it work? What percentage of pain relief did you realize? Were you able to come off your pain meds? Did you experience any infection issues? Brand of the device you had implanted? Based on your experience, would you recommend an implant to relieve neuropathic pain?

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2 replies
paulbse | @paulbse | May 9 11:44am
In reply to @mlee5309 "I would love to know if anyone has tried hyperbaric chamber sessions for neuropathy. I am..." + (show)
@mlee5309

I would love to know if anyone has tried hyperbaric chamber sessions for neuropathy. I am out of ideas but I’ve never tried this or seen ir mentioned. Probably a scam but I’m desperate enough to fall for any scam at this point

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I tried hyperbaric chamber sessions for 12 weeks with no change in my peripheral neuropathy pain.

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paulbse | @paulbse | May 9 11:49am
In reply to @mlee5309 "Have you ever tried a hyperbaric chamber? I can’t find any personal anecdotes of anyone who..." + (show)
@mlee5309

Have you ever tried a hyperbaric chamber? I can’t find any personal anecdotes of anyone who has for neuropathy

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I tried hyperbaric chamber sessions for 12 weeks with no change in my peripheral neuropathy pain. In actuality, I was sent to the chamber to promote the healing of a wound on my right foot from a metatarsal amputation. The wound did not heal any faster either so I don't know why hyperbaric chambers should be recommended for anything beyond preventing the "bends" in divers.

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aaron_az | @aaroncush | May 9 1:05pm
In reply to @aaroncush "The last thing I heard about WinSantor was they did not have the funding necessary to..." + (show)
@aaroncush

The last thing I heard about WinSantor was they did not have the funding necessary to begin phase 3 trials.

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Here is a link to a podcast with WinSantor where they talk about funding from a few weeks ago: https://m.youtube.com/watch?v=jJetVLUnhQM&t=3522s

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Mentor
John, Volunteer Mentor | @johnbishop | May 9 1:35pm
In reply to @paulbse "Spinal Cord Implants for Peripheral Neuropathy: Has anyone had any experience (good or bad) with spinal..." + (show)
@paulbse

Spinal Cord Implants for Peripheral Neuropathy: Has anyone had any experience (good or bad) with spinal cord stimulators? How well did it work? What percentage of pain relief did you realize? Were you able to come off your pain meds? Did you experience any infection issues? Brand of the device you had implanted? Based on your experience, would you recommend an implant to relieve neuropathic pain?

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@paulbse, There are a lot of members who have shared their experience with spinal cord stimulators. Here is a link that shows the discussions and comments on spinal cord stimulators:
https://connect.mayoclinic.org/search/discussions/?search=spinal%20cord%20stimulator/

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Mentor
John, Volunteer Mentor | @johnbishop | May 9 1:39pm
In reply to @davidlscott73 "Well, I have constant bad numbness in both feet with tingling but not pain. I assume..." + (show)
@davidlscott73

Well, I have constant bad numbness in both feet with tingling but not pain. I assume that it was caused by alcoholism for about 15 years. I stopped 7 years ago but the neuropathy did not improve. Now im flooded with tons of advice from people to “cure” it and nothing has helped. So I’m careful and sought help here.

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@davidlscott73, It sounds similar to my neuropathy journey but mine wasn't caused by alcohol as far as I know. I posted my journey here - https://connect.mayoclinic.org/comment/310341/. You might want to scan through the discussions and comments on neuropathy with numbness only. Here is a link that lists discussions, comments and more - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20numbness%20only

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