Living with Neuropathy - Welcome to the group

Hello @larrymcj and @zebra1222, Welcome to Connect. Glad to see you are both searching for answers to help with your neuropathy symptoms. I thought I would share this link to the Foundation for Peripheral Neuropathy's list of complementary and alternative treatments in case you haven't seen it.

-- Peripheral Neuropathy Treatments:
https://www.foundationforpn.org/treatments/
You might also like to read through the Member Neuropathy Journey Stories: What's Yours? discussion here:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Hoping you find some answers!

Glad to find this group. Just ordered bentothiamine (sp?) for my neuropathy. Will report on its effectiveness.
I've had neuropathy for over 15 years and tried all sorts of things, even getting injections of vitamins between the toes which did not help. As yet I am not diabetic but prediabetic. I Look forward to hearing from members.

Thanks, but like many of the actual drugs used to mitigate the symptoms, alpha lipolic acid should not be taken if you have only one kidney (according to my doctor).

Welcome @ellbee, I've carried that pre-diabetic tag with me for 20+ years also and have recently thought it may have something to do with my idiopathic small fiber peripheral neuropathy. So, I'm working on getting out of the pre-diabetes diagnosis after doing a little reading on the metabolic syndrome which fits most people in the pre-diabetes category.

-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

Do you have pain with your neuropathy symptoms?

gbrodnan1945 Does Metanx work idiopathic peripheral nuropathy. I am 77 and have been using it for 10 years with limited success.

Welcome @daimudan, We are happy you've found us!! There are a lot of different discussions in the Neuropathy group that you might find helpful. Here's the complete list of discussions -
https://connect.mayoclinic.org/group/neuropathy/.
Also, I thought I would share 2 of my favorite sites for learning more about neuropathy in case you haven't seen them:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Do you mind sharing a little more about your diagnosis and any treatments you've tried?

Hi @gbrodnan1945, Welcome to Connect. I have no medical training or background but I think Metanx is a vitamin supplement that has to be prescribed by a doctor and is used mostly to help people with diabetes with neuropathy. I do take supplements to help, also with limited success but I do think it's slowed or possibly stopped the progression of my idiopathic small fiber PN. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Early on I learned about Metanx but decided not to try it because it contains a lot of vitamin B6 which can also cause neuropathy if you have an issue with too much B6 in your system. There is another small discussion on Metanx here - https://connect.mayoclinic.org/discussion/metanx/

Do you have pain with your neuropathy?

@gbrodnan1945
Does it help numbness?
Is it covered by insurance, if not is it expensive? Does this medication work lin non-induced diabetic neuropathy? Is this medication formulated strictly for neuropathy for a vitamin deficiency?
Thanks much,
Jake

Sure! (short version) Following my initial J&J vaccine, I started having numb spots throughout my body. Fingertips, toes, belly, left leg. Eventually my left leg went dead. It felt like a prosthetic; like it wasn't mine. After 8 months of tests, tuling things out, and a nerve induction, I was told it was axonal polyneuropathy.

Numbness in the toes, bone crushing pain in the feet, typically after (even a short time) periods of rest or just getting up. Systemic body aches and stiffness. It was also found through labs that I had pretty bad B6 toxicity, so that hasn't been in the equation for over a year. Difficulty dealing with things that were seemingly simple before - a flight of stairs. A simple curb. Fell several times, three times ending with fractures.

PT did little to nothing for me (in Phx). Pregabaline and Tramadol helped take the edge off.

I was lucky enough, here in Tucson, to find a DPT who took the time to study my issues, talk to neurologist pals of his and work in my proprioception. We also do strength work. Pain is half of what it was a year ago. I'm always eager to learn more.

I am 73 and have been dealing with neuropathy in my feet for 5 years. It started with just a few left toes. Now really uncomfortable burning almost all the time in both feet. I am beginning to feel some tingling and numbness in my finger tips.
I have tried many meds. Right now I am using Voltaren gel, Robinorol and Pregablin. I am functioning.