This is the $64,000 question. . .WHY NO MED FOR NEUROPATHY?

highdesertdweller, imo there are things that help with what is called neuropathy. Really good physical therapy helps and an adjustable bed where you can, for example, raise the feet which takes pressure off the lower back and sleeping that way is a huge help. Or/and you can adjust lumbar position or raise or lower the head. You can massage also.

Swimming helps. I suppose I am just lucky not to have as painful a case as you have, but I can almost get rid of the tingling in arms and legs by sleeping well in adjusted position. I almost forgot to mention neck traction for 10-20 minutes a day. There are devices for this that you can use at home. I borrowed one, but had to give it back when another patient needed it. I am definitely buying myself one. I would wake up in pain, do the neck traction and go on without pain.

Here is an editorial piece that is written much better then my ramblings:
https://www.westsideseattle.com/robinson-papers/2026/03/18/pats-view-people-peripheral-neuropathy-might-see-solution
It may be available in Montanas Right to Try program:
https://www.pfsfoundation.org/news/rushing-to-relieve-peripheral-neuropathy-winsantor-ditches-fdas-compassionate-use-program-and-goes-directly-to-the-state-with-americas-most-permissive-right-to-try-laws/

@bajjerfan

I actually did get a response from them. They arent doing clinical trials at the moment. Theyve done phase 2 trials. Here is some current info :

“The pathway we are actively building is a state-level Right to Try program in the state of Montana, under new state legislation. We expect to have meaningful clarity on the program in the next couple of months. Once it's live and we have updated the WinSanTor family, the next step for patients will be to reach out to your physician to be referred to a participating Experimental Treatment Center (ETC) in Montana. Patients will need to travel to and be treated in the state of Montana through the participating ETC, under physician supervision. We anticipate eligibility will extend beyond diabetic peripheral neuropathy to include other neuropathy etiologies, though final eligibility criteria are still being finalized.

In parallel, we are pursuing conditional approval in the Canadian market and continuing our Phase 3 program in the US.”

Have you tried low dose Naltrexone?

@megidigo thank you for the link. I am impressed with what Pirenzepine could 'potentially' do for neuropathy and nerve repair, but it looks like it is not yet FDA approved to treat neuropathy.

@megidigo
The drug WinSanTor is developing is WST-057 (pinzeprine) - you might find more info searching for those terms.
Here is the latest I could find:
https://www.pfsfoundation.org/news/rushing-to-relieve-peripheral-neuropathy-winsantor-ditches-fdas-compassionate-use-program-and-goes-directly-to-the-state-with-americas-most-permissive-right-to-try-laws/
It appears the corporation has chosen to bypass the FDA required Phase III trials, so who knows what the future may be for this treatment?

Thanks, all. Thanks, Megidio for the update! I did sign up for their newsletter, et al. so I absolutely WILL travel to Montana if they can get it through there. I will call and encourage Mr. Kim. He makes so many excellent points about our medical process in that video with Western Neuropathy. Amazing there are not a dozen companies working on this. Just from the financial standpoint it would be huge for the companies. I think SO MANY small companies have trouble getting the FDA to approve meds, right??? In the process of making something "safe", how much suffering goes on before approval, and nothing is absolutely safe.

@sueinmn

Not to appear rude but
They are not bypassing Phase 3 trials they are shifting away from the FDA’s Expanded Access Program (aka compassionate use) to Montanas Right to Try Program.

As per the link you provided (i also posted it earlier) and the info I received directly from them in an email from Winsantor regarding phase 3 trials:

“ In parallel, we are pursuing conditional approval in the Canadian market and continuing our Phase 3 program in the US.”

“ In the case of WST-057, the drug has already completed Phase 1 and Phase 2 trials, and is currently in the final development stages of Phase 3 trials.”.

The future is the Right to Try Program in Montana.

If that happens I suppose.

@highdesertdweller

There is a Korean company that was developing a drug for diabetic peripheral neuropathy but I think failed phase 3 trials.

I found this link that mentions they are studying it for Charcot Marie Tooth disease which is a peripheral neuropathy.
https://charcot-marie-toothnews.com/news/gene-therapy-engensis-shows-early-sign-benefitt-cmt1a/
Then this link says they failed phase 3:
https://www.koreabiomed.com/news/articleViewAmp.html
The companies website: https://www.helixmith.com/eng/

When I was first diagnosed I asked so what do I do after being told there is nothing we can do (guess I didnt want to believe it. I was told to look for clinical trials.

I look for them every now and then and know there is one for Walkasins currently and then the Montana program possibly coming up. Now the issue for me would be getting to these.

I have tried contacting one of the researchers from Winsantor at his university to no avail. Wasnt expecting a response but got nothing left to lose and figured what would it hurt…..

Im gladly willing to be a human pin cushion for any drug trials if they were to come up if my circumstances were to allow.

So, Megidio, why do you think there is the lack of response? If people are opposed to Winsantor for some reason, why are they not saying so? I DID speak to Mr. Kim today and he is just asking for support and spreading the word. He did not ask me for any money or active involvement, just said to make sure I am receiving the newsletter, et al. AND AM GETTING THE WORD OUT ABOUT THE DISEASE. They are hoping for a response from Montana, either way, in the next couple of months.