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.
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
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
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?
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.
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.
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.
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?
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.
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
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
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
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.
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.
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.
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?
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-
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.
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
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?
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.
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?
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
Testing for Small fiber and Large fiber.
The difference and is it all neuropathy
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/
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.
The last thing I heard about WinSantor was they did not have the funding necessary to begin phase 3 trials.
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.