Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2, 2024

I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.
What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.

Interested in more discussions like this? Go to the Neuropathy Support Group.

eeriwa | @eeriwa | 1 day ago

interested in neuropathy support group

haj | @haj | 1 day ago

In reply to @jakedduck1 "@kgitti Has Topamax and gabapentin affeted your vision? Jake" + (show)

Jake taken it for about a month Gabapentin my left eye acts up with vision blurry. Don’t know why

haj | @haj | 1 day ago

In reply to @peg8842 "I was having really sharp pain in my feet at night for about 2 years, then..." + (show)

Hi Peg the cream works with know skin problems, itchy burning feelings.

John, Volunteer Mentor | @johnbishop | 1 day ago

In reply to @eeriwa "interested in neuropathy support group" + (show)

Welcome @eeriwa, Here's a list of discussions currently in the Neuropathy Support Group - https://connect.mayoclinic.org/group/neuropathy/.

What type of neuropathy and symptoms do you have?

kidnurse1 | @kidnurse1 | 1 day ago

In reply to @johnbishop "Welcome @eeriwa, Here's a list of discussions currently in the Neuropathy Support Group - https://connect.mayoclinic.org/group/neuropathy/. What..." + (show)

Pudendal pain

John, Volunteer Mentor | @johnbishop | 1 day ago

In reply to @kidnurse1 "Pudendal pain" + (show)

Welcome @kidnurse1, Here's what a quick search of Connect found for pudendal pain - https://connect.mayoclinic.org/search/discussions/?search=pudendal%20pain. Has your doctor provided any suggestions to help with the pain?

drdianeschneider | @drdianeschneider | 20 hours ago

Hello, bigjohn, I have had SFN in the feet, legs, thighs, and beyond for 4 years, which they say is a side-effect of having ulcerative colitis for 30+ years (not sure I believe this, as no gastroenterologists seem to have heard of it). I am lucky in having only numbness, no pain or even tingling etc. but it feels unpleasant & affects my balance. I have tried various combinations of vitamins but no solid results. Recently saw a podiatrist for it and he put me on METANX, which he described as an algae-based, "beefed up B-12" (& has some other B's). It is expensive, but I'm trying it for 3 months to see if I get any results. I will report back here, if so. Just wanted to add one more possibility to the pile! Let's hope this is something that actually kicks in eventually. Keep hopeful... Cheers, Diane

Leonard | @jakedduck1 | 15 hours ago

@haj
A number of seizure medications have visual side effects, some have actually caused blindness. Probably most notable is Sabril. I took gabapentin too but it wasn't effective for my neuropathy or seizures. Exactly why gabapentin causes visual problems isn't fully known.
You might want to be checked out by an ophthalmologist just to set your mind at ease. I have taken anticonvulsants for nearly 60 years now.
Jake

billl | @billl | 1 hour ago

In reply to @jakedduck1 "@haj A number of seizure medications have visual side effects, some have actually caused blindness. Probably..." + (show)

Thanks for the information. I have found that topical marijuana does help with the pain, but just will not last long. I live in Florida and can buy medial marijuana. It does help.