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.

harley22 | @harley22 | May 7 12:14pm
In reply to @norelle27 "I have Perscription Dermapad w/5% lidocaine- Also doc is calling in a topical gabapentin creme made..." + (show)
@norelle27

I have Perscription Dermapad w/5% lidocaine- Also doc is calling in a topical gabapentin creme made a a compounding pharmacy- not covered by insurance.. will report back after I have used it ( not covered by insurance) 130.00!!! Yes, I’m desperate to relive pain at all costs🥲

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I also had something from a compounding pharmacy for my foot pain.
It consisted of 4 or 5 different things including lidocaine.
I had to discontinue it because my foot broke out in hives after using it.

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bigjohnscho | @bigjohnscho | May 8 5:42am

This product is virtually identical to NUPHORIA GOLD which has been on the market for a long time

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uaa | @uaa | May 8 9:34pm

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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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 9 8:03am
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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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.
----------
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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1 reply
davidlscott73 | @davidlscott73 | May 9 8:08am
In reply to @aaroncush "I think the biggest problem is neuropathy is a symptom of something else and not a..." + (show)
@aaroncush

I think the biggest problem is neuropathy is a symptom of something else and not a disease in and of itself. What works for one person won’t necessarily work for another. My symptoms are caused by inflammation and I seme-successfully controlled the pain with supplements that targeted inflammation, then when that was no longer enough added LDN to the supplements and got another 10 months. Now that combination is not enough (either my body has grown a tolerance to what I am taking or it is progressing) and I am back at the search for relief.

So if you want to try something, ask your doctor about LDN - it worked wonders for me for about a year, and did nothing for my father with type-2 diabetic neuropathy, so your mileage may vary.

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If you want to target inflammation, then stop eating sugar. I have had both knees replaced twice, 2 lumbar surgeries to fuse vertebrae, shoulder surgery, and arthritis from all the sports injuries. Every day I take 2 advil every 4 hours until a month ago I quit sugar to lose weight. Within 2 days I found that I would forget to take the advil because I had no pain reminders and of course I lost 15 pounds in 1 month. My foot numbness is still there! But the pain is less! Like 50% less! Cane sugar is not natural, nor is corn syrup.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 9 8:32am
In reply to @davidlscott73 "If you want to target inflammation, then stop eating sugar. I have had both knees replaced..." + (show)
@davidlscott73

If you want to target inflammation, then stop eating sugar. I have had both knees replaced twice, 2 lumbar surgeries to fuse vertebrae, shoulder surgery, and arthritis from all the sports injuries. Every day I take 2 advil every 4 hours until a month ago I quit sugar to lose weight. Within 2 days I found that I would forget to take the advil because I had no pain reminders and of course I lost 15 pounds in 1 month. My foot numbness is still there! But the pain is less! Like 50% less! Cane sugar is not natural, nor is corn syrup.

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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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1 reply
mlee5309 | @mlee5309 | May 9 9:00am

I thought this thread would be appropriate to ask has anyone tried Calmare therapy? It’s fda approved and non invasive but it looks to Run 4-6 grand and seemingly unlikely insurance will help. I would risk it for any semblance of hope but I can’t afford to lose that money to a complete scam. But god I’m desperate

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1 reply
bowersra | @bowersra | May 9 9:09am
In reply to @bowersra "I have had a skin punch biopsy showed small fiber neuropathy I am new to talking..." + (show)
@bowersra

I have had a skin punch biopsy showed small fiber neuropathy
I am new to talking about this. But have had neuropathy for at least 12 years.
Doctor does not understand what we go through

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Testing for Small fiber and Large fiber.
The difference and is it all neuropathy

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Mentor
John, Volunteer Mentor | @johnbishop | May 9 9:10am
In reply to @mlee5309 "I thought this thread would be appropriate to ask has anyone tried Calmare therapy? It’s fda..." + (show)
@mlee5309

I thought this thread would be appropriate to ask has anyone tried Calmare therapy? It’s fda approved and non invasive but it looks to Run 4-6 grand and seemingly unlikely insurance will help. I would risk it for any semblance of hope but I can’t afford to lose that money to a complete scam. But god I’m desperate

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Hello @mlee5309, I think Calmare Therapy does offer hope for a lot of people. There are a few discussions you might want to scan through to learn what others have shared.

--- Hope: Starting Calmare scrambler therapy:
https://connect.mayoclinic.org/discussion/hope-1/
--- Has anyone used MLS Laser therapy or Calmare Therapy?
https://connect.mayoclinic.org/discussion/question-about-therapies/

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aaron_az | @aaroncush | May 9 9:11am
In reply to @davidlscott73 "If you want to target inflammation, then stop eating sugar. I have had both knees replaced..." + (show)
@davidlscott73

If you want to target inflammation, then stop eating sugar. I have had both knees replaced twice, 2 lumbar surgeries to fuse vertebrae, shoulder surgery, and arthritis from all the sports injuries. Every day I take 2 advil every 4 hours until a month ago I quit sugar to lose weight. Within 2 days I found that I would forget to take the advil because I had no pain reminders and of course I lost 15 pounds in 1 month. My foot numbness is still there! But the pain is less! Like 50% less! Cane sugar is not natural, nor is corn syrup.

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While you are correct in saying sugar is not good and can cause inflammation, if that was my problem, it would be a non-issue. I have been low-carb for several years, am not pre-diabetic, and not overweight.

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