Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2 6:09am

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.

kbirchem | @kbirchem | Oct 28 9:03pm

In reply to @cecelia19 "Please tell me what the brand of ALA is that you take and how much." + (show)

I take 1800 mgs per day . I take 600 mgs in the am . I take 600 mgs at bedtime . It is R Alpha lipoic acid . I also take 600mgs in the afternoon.

cecelia19 | @cecelia19 | Oct 28 11:03pm

In reply to @kbirchem "I take 1800 mgs per day . I take 600 mgs in the am . I..." + (show)

Thank you! I wouldn’t have thought to take more than 600 mg so maybe increasing the dose is what I need. Also, I was taking the “S” form.

cecelia19 | @cecelia19 | Oct 28 11:10pm

In reply to @kbirchem "I am currently taking gabapentin . It has been a lifesaver for me . I had..." + (show)

It has been a lifesaver for me too. How much do you take? Right now I am on 300mg 3x/day but have been advised to increase to 600mg 3x/day over the next month to eliminate breakthrough pain. Wondering if that seems like too much.

gzr7 | @gzr7 | Oct 29 3:35am

In reply to @johnbishop "Welcome @gzr7, My primary care doc wanted me to go on statins 5 or 6 years..." + (show)

Thanks John, I appreciate your very sensible comments and suggestions. I look forward to investigating statin alternatives and lifestyle changes.

heisenberg34 | @heisenberg34 | Oct 30 9:30am

I have severe PN. Walking any distance is very problematic. Sitting is painful. I have tried some at-home exercises, but they only ramp up my pain. Does anyone out in Mayoland know if there are physical therapists who are able to treat patients with my affliction? Would like to be able to do SOMETHING.
Thanks to all. Have a blessed day!

natelew | @natelew | Oct 30 9:47am

In reply to @cecelia19 "It has been a lifesaver for me too. How much do you take? Right now I..." + (show)

I too take Gabapentin 300mg 3x a day. I just had my EMG done on my lower extremities today, the upper extremities will be done next week. It’s a shame that so many people suffer with PN and it hasn’t been any new treatments that can relieve the pain we are experiencing.

Leonard | @jakedduck1 | Oct 30 9:49am

In reply to @kgitti "FOR what its worth, I have CIDP, chronic inflammatory demialating polyneuropathy. I take a high dose..." + (show)

@kgitti
My Neurologist tried giving me Dope-a-max as it is often called in Epilepsy circles which I refused. I'm just curious, if you have experienced any ocular side effects from taking Topamax? I have known too many people that took it and ended up with serious visual defects and including blindness. Many seizure medicines cause visual side effects.
Thanks,
Jake

John, Volunteer Mentor | @johnbishop | Oct 30 12:49pm

In reply to @heisenberg34 "I have severe PN. Walking any distance is very problematic. Sitting is painful. I have tried..." + (show)

Hi @heisenberg34, There are some members who have found that Myofascial Release Therapy has helped. There is a discussion on the topic here:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/