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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
I worked in the pharmaceutical industry for almost 40 years. I doubt they have even filed an NDA with the FDA. It could take years to get here, if ever. I was at the mayo clinic in Rochester this past June to confirm a diagnosis of idiopathic small fiber neuropathy, which they did. They offered no hope for my pain. Do you know of any effective drugs coming to the United States anytime soon. I just wonder if anyone in the world is researching how to cure neuropathy, or if everyone is just interested in another mediocre pain treatment. Currently, I am in a trial of spinal cord modulation to see if it can help with the pain. They have been researching neuropathy for decades and all they can come up with or the anti-seizure drugs or Cymbalta to help treat the pain. That shows you that one, it’s either a very difficult research area or they don’t think it’s profitable enough to research for a cure. The Mayo clinic did a lot of tests on me some of which I’ve had done several times. Nothing of any significance was found. So basically it was a waste of time and money. Wish I had better news coming from my trip to Mayo.
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@magnum52, I had the same feeling when my Mayo neurologist told me there was nothing that could help with the numbness from my idiopathic small fiber PN which put me on my quest to find something that would help me. Although I don't have pain with my neuropathy there are others who are suffering like you that have been helped with the supplements I take for my neuropathy. Here's a post from a member in the UK that you might find interesting if not helpful - https://connect.mayoclinic.org/comment/611196/. I posted my story in the Member Neuropathy Journey Stories: What's Yours? discussion here - https://connect.mayoclinic.org/comment/310341/
I think it helps to do your own research and learn as much as you can about your specific type of neuropathy and treatments that are available including complementary and integrative. I started with the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/) after my Minnesota Neuropathy Association support group stopped having meeting. Then I found one of the best sources for neuropathy information is Neuropathy Commons (https://neuropathycommons.org/). Lastly I use Google Scholar (https://scholar.google.com/) because you can sort the results by year to find the latest medical research on a subject.
My hope was always in stem cell therapy but it will be no where in my lifetime. WinSanTor has shown some promise in helping diabetic neuropathy sufferers but I really have my own personal bias and doubts because it seems like just another new drug solution for symptoms and not a cure.
Hopefully you will find some answers and something that provides relief for you. Keep search and asking questions 🙃