What are the most recent treatments for Large fiber neuropathy

MIT, has been working on an inject with animals that shows some promising results in lab animals.i haven’t heard if they started experimenting with humans.

Hello @aljohnson1949, I would like to add my welcome to Connect along with @frankmoore and others. I haven't seen any specific clinical trials for large fiber neuropathy. The Foundation for Peripheral Neuropathy has some information on clinical trials and a link to search if you want to check it out - https://www.foundationforpn.org/clinical-trials/.

Are you dealing with neuropathy pain symptoms? Have you looked into any complementary or alternative therapies?

This is something I wander about myself and have not found anything. I know Winsantor had trials where I used to live but I had not heard of either Neuropathy or Winsantor when they were held. Funny how that works and wish it would have stayed that way.

Supposedly Winsantor is moving ahead in Montana with their right to try program for their topical cream. If nothing comes out of that then Im sure that door dash will close.
https://montanabio.org/sb535-right-to-try-montana/
*edit - I did some googling and noticed that Winsantor mentioned right to try programs 6 years ago. While I really want for this drug to be available it really does feel like a dangling carrot.

Hello, @aljohnson1949

I will follow with thread with great interest. I regard my PN as large-fiber PN, although it has never been formally diagnosed as such. I've based my conclusion only on the reading I have done and the fact that my PN gives me absolutelly no pain. My only symptom is a troublesome gait. I've not fallen, but I am round-the-clock on guard. My efforts to strengthen my legs, which I believe is about all I can do if I wish to slow, if not stop, any further progression of my unstable way of walking, is thwarted by a badly arthritic left knee. I'm right now trying to decide if I should go ahead with a knee replacement (scheduled for 6/25). My right knee is already a prosthetic, but I got that one 20 years ago, when I was still living with my partner (she has since died), and not pestered by a wobbly way of walking. I'm glad you posted this. As I said, I'll be watching eagerly for the replies you receive.

Cheers!
Ray (@ray666)

Ray666 I will be watching too. I'm in the same leaky boat.

@ray666 Hi Ray --- Like you, similar symptoms and issues, I too will keep a watchful eye with interest due to my progressively worse large fiber. This is a very interesting subject for many. Ed

Thanks Ed. I'm keeping a watchful eye for any new developments in this area of large fiber neuropathy research.

https://leadingedgephysio.com/blog/stimpod-therapy-chemotherapy-induced-neuropathy-edmonton-calgary-kelowna/
Does anyone have further information on "Managing Neuropathy with Stimpod NMS460"
This is a radio-frequency treatment, but the devices are very expensive!
Thanks for your help!

@johnbishop

@njed Hi, Ed– Same here: I saw "large fiber" and thought Ah, ha! This is a topic to follow. I sympathize with all those with small fiber, but I often find myself motioning toward the stage, "Say, there, don't forget about us large fiber PNers!" 🙂 –Ray (@ray666)