Living with Neuropathy - Welcome to the group

Hi folks,
I just found the group, and am interested in learning what treatments are “out there” besides the medication I am taking. My neuropathology is a bit complicated because of pre-existing conditions related to massive brain trauma and (unrelated)chemotherapy, later compounded by (unrelated) brain stem tumor/surgery.

I have neuropathy in my feet, going up my legs.For the past few years, I have been having UTI's, vaginitis. I take the meds and it always comes back. Sometimes there is no infection and I still have burning. Could there be nerve damage in that area causing the burning? My urologist doesn't know, Urogynecologist doesn't know. I need to go back to my neurologist. Anybody else have this problem?

Welcome @adchandler, There are a lot of different treatments available for neuropathy that people with neuropathy have found helpful. One of the more comprehensive lists I've seen is on the Foundation of Peripheral Neuropathy's website here - https://www.foundationforpn.org/treatments/. They also have a list of complementary and alternative treatments that might be worth reviewing here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

You might also find the following discussions helpful:
--- Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
--- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/
--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/.

Have you looked into any alternative treatments?

I think it is probably too early to know for sure but for the last 2 months I have been taking 1g of Host Defense Lion's Mane Mushroom caps (from Amazon) a day and I have clearly noticed that the severity of several of my most troubling peripheral neuropathy symptoms have definitely diminished. I still have a long list of symptoms but the overall intensity has improved substantially. I have suffered with PN for well over 20 years and I am hoping that this relief continues to pass the test of time.

Who recommended the Lion’s Mane? Glad it’s working for you.

This is what I saw on this site in early March. Because I am always on the lookout for possible symptom help I ordered some immediately and so far I am very pleased with the apparent results.

madison2023 | @madison2023 | Mar 6 11:26am
"Has anyone tried or heard any positive feedback about the use of Lions Mane (mushroom) for the treatment of neuropathy? A nurse whose dad suffers from severe neuropathy told my mom that there are encouraging studies regarding it's use for nerve damage. I can find studies relating to animals but not humans thus far. I am always leery of supplements that are not regulated."

I think it is probably too early to know for sure but for the last 2 months I have been taking 1g of Host Defense Lion's Mane Mushroom caps (from Amazon) a day and I have clearly noticed that the severity of several of my most troubling peripheral neuropathy symptoms have definitely diminished. I still have a long list of symptoms but the overall intensity has improved substantially. I have suffered with PN for well over 20 years and I am hoping that this relief continues to pass the test of time.

Thank you for your information. I think I’ll add the mushrooms to my daily supplements. I have found that Benfotiamine, alpha lipoic acid, primrose oil, acetyl l-carnitine and grape seeds supplements on top of my prescription Lyrica have largely eliminated at least the sharpest of the tingling. I did find a supplement that puts most of these together in one liquid instead of all the pills. I just received a bottle and will be switching over in a day or two. I’ll report back here if it works well. I’m hopeful the mushrooms will work well for me. Thanks for sharing your information.

Your list of supplements is very helpful. I do take acetyl L carnitine but haven't noticed that it has helped me much and I tried alpha lipoid acid for a few months but it seemed that I had a poor stomach reaction. I would be interested to know about the liquid supplement that combines most of the things you listed. Thank you for your information.