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.

heisenberg34 | @heisenberg34 | Nov 2 11:58am

In reply to @johnbishop "Did they run a test for uric acid? Think it’s called urate test." + (show)

Yes. Uric acid levels are in normal range. I was a lab tech for a number of years and performed many, many chem tests. It's truly amazing when levels of certain chemicals that pass into the blood stream at higher levels(oxalic acid, uric acid, etc,) and precipitate into tiny little crystals that can congregate into masses large enough to create pain signals. BEGONE, YE VARLETS!

John, Volunteer Mentor | @johnbishop | Nov 2 12:14pm

In reply to @heisenberg34 "Yes. Uric acid levels are in normal range. I was a lab tech for a number..." + (show)

Begone indeed!

kgitti | @kgitti | Nov 2 12:18pm

In reply to @jakedduck1 "@kgitti My Neurologist tried giving me Dope-a-max as it is often called in Epilepsy circles which..." + (show)

I have had zero side effects from Topamax after taking it alongside Gabapentin and IVIG (SCIG now), and an antidepressant and Ritalin since 2021.
Don’t assume you will get side effects because someone else has. Oftentimes these drugs are very helpful and side effects are very rare. Along with PT and an anti inflammatory diet, I have a reasonably full life. Not what it was before, but I’m still working and enjoying life at 74.

Leonard | @jakedduck1 | Nov 2 8:21pm

In reply to @kgitti "I have had zero side effects from Topamax after taking it alongside Gabapentin and IVIG (SCIG..." + (show)

@kgitti
I know they are only POTENTIAL side effects and probably wouldn't have affected me since I’ve seldom been bothered with side effects. Topamax as far as I know is the most likely to cause visual issues and I wasn't willing to take the risk since I already had a couple of vision problems. But there were plenty of alternatives unlike 60 years ago.

bgator | @bgator | Nov 3 10:32am

That’s a great idea,
New Renew (no help)
Alpha Lipoic Acid (not sure if it helps or not but I take it because some people said it helps)
B12(took so much my doctor told me to stop, did not have a B12 deficiency so I stop taking it)
Extra strength Tylenol (helps with my aching legs, I guess it reduces the swelling and inflammation and gives me some relief)
Pain Meds (if I didn’t have pain medicine I would go insane with this crap)
Gabapentin (why do I take this? I don’t know if it helps or not but the doctor said to take it so I do, 1300 mg/day
Nothing out there helps except pain meds, and I know but it will kill you, so will neuropathy in its own way, slowly and never leaving.
It’s worst than an addiction, at least with an addition you can get some help!
I wish I could give someone good news but there isn’t any for me. Just more of the same pain.

jchet | @jchet | Nov 3 10:37am

In reply to @ednam "Mama Bear Oasis cream saved me! It’s the only thing that works for me! Definitely try..." + (show)

What is Mama Bear Oasis Cream made of? What kind of neuropathy do you have?

jchet | @jchet | Nov 3 10:41am

In reply to @jchet "What is Mama Bear Oasis Cream made of? What kind of neuropathy do you have?" + (show)

Got your message that it’s made of magnesium. Thx! What kind of neuropathy do you have?
Where do you buy Mama Bear?

wolfie1 | @wolfie1 | Nov 3 2:17pm

In reply to @heisenberg34 "I have run into those types of scams. My favorite was the chiropractor who was part..." + (show)

A friend of mine fell for that, invested months of time and over 7,000.00. I said if it works it’s worth it. Unfortunately he just loss money. Every time I see their commercial I cringe thinking of all those innocent sufferers that will just lose money.

thetillmanthetillman | @thetillmanthetillman | Nov 3 2:48pm

Hi iam a late 70s guy pn for 5 years like many iv tried everything creams tabs eg amptidripline b12 nitric oxide r ala I do rem once a co I deal with nerve renew USA based one time saying although we all know its not supposed 2 be curable some things work for some and not for all about 3 years ago I bought a pair of those neumatic leg boots about160 us dollars now you can buy the same ones for 70 2 80 sterling I read that I should use them twice a day once say lunch time and once fir about 40 mins b 4 bed well it's working I know get 6 2 7 hours sleep due to better blood circulation now the pn is still there in my case burning but I sleep better enabling me t cope with the next day more easily I recon iv spent 3000 sterling over 6 years dictors nuerolisists creams tabs etc this works for me no need to spend 1000 pounds for high end neumatic boots they are for fit young athletes if you can sleep more without getting up every 2 hours to put on ice socks it's worth it I recon 80 dollars to help your blood circulation is worth it I also walk 1 hour a say yes ut burns and I swim 30 mins a day blood circulation is everything weather u have burning pain or numbness james from ireland