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.

felicelinda | @felicelinda | Sep 26 4:29pm

In reply to @bigjohnscho "Has anybody watched the Devinci method to cure neuropathy?The video follows the same format as all..." + (show)

Has anybody tried Scrambler Therapy? I think The Mayo Clinic uses it as one of its treatments for neuropathy..

John, Volunteer Mentor | @johnbishop | Sep 26 6:07pm

In reply to @felicelinda "Has anybody tried Scrambler Therapy? I think The Mayo Clinic uses it as one of its..." + (show)

Hi, Did you see the responses in the discussion you started about the Scrambler Therapy? Here's the link to your discussion - https://connect.mayoclinic.org/discussion/scrambler-therapy-for-neuropathy/.

bigjohnscho | @bigjohnscho | Oct 7 7:35am

Has anyone tried the Orthoback Vibrastone?It is a hand held device which vibrates and heats when applied to the area of neuropathic pain, feet for example. It’s on the internet with an explanation of how it works.

heisenberg34 | @heisenberg34 | Oct 7 9:46am

In reply to @bigjohnscho "Has anyone tried the Orthoback Vibrastone?It is a hand held device which vibrates and heats when..." + (show)

I just did a search for reviews on TrustPilot, a reputable site. It gives this thing(as I fully expected) 94% 1 star ratings. So, I would say save your money.

adbrown | @adbrown | Oct 23 7:55am

I have tried everything from creams, supplements R-Alpha Lipoic Acid to EMS foot massager. I am a type 2 diabetic. I took Metformin for 20 years. It seems to be the cause of my neuropathy. It striped away the B12 that supports the nerves. Things that get me through the never ending pain flare ups in my feet is daily EMS helps, Aspercreme with Lidocaine, and keeping my legs and feet moisturized. I use the diabetic lotions. I no longer take Metformin if you are diabetic get off it now. There are newer drugs that won’t have the side effects. The loss of B12 is the main reason our nerves are no long working. It is so hard to rejuvenate the B12 in supplements. Most supplements use synthetic B12 as their ingredient. So if you know of anything that is almost a sure cure for this expensive and almost endless struggle please pass it my way. I continue to exercise and keep praying for a cure. Save your money all advertisers are SCAMs. Restore B12 don’t know how get your life back.

John, Volunteer Mentor | @johnbishop | Oct 23 8:27am

In reply to @adbrown "I have tried everything from creams, supplements R-Alpha Lipoic Acid to EMS foot massager. I am..." + (show)

Welcome @adbrown, You are so right about doing your own research and advocating for your health. There are a lot of scams and dubious treatments out there for neuropathy as well as other conditions and we owe it to ourselves to do the research first.

There are some members who have discussed B12 injections. Here's a link to the discussions and comments - https://connect.mayoclinic.org/search/?search=B12+injections
Have you been tested for B12 deficiency?

kbirchem | @kbirchem | Oct 27 9:22pm

In reply to @carolinlv "Thank you so much for taking the time to share this information with me. I’ve had..." + (show)

I took rosuvastatin for a couple of years . I was not a diabetic before taking it . I did my research . I found out that Rosuvastatin can raise your blood sugars . My Dr Malachia Trout at the Fargo VA told me that she knew that the statin would raise my blood sugars . She said that she made a decision that was best for me . When I started having tingling in my toes and feet . I asked her if the statin could have caused the problems . She said no. But , she never once told me that the statin could take me from a prediabetic to a diabetic . I stopped taking rosuvastatin and my blood sugars went down . I now am taking Alphalipoic acid . It helps with the tingling and burning .

kbirchem | @kbirchem | Oct 27 9:39pm

In reply to @suzirtist "For me, the frozen feeling correlates to the medicine. I take a hairdryer and put it..." + (show)

Both of my feet used to be cold all the time . I did some research on PRP injections . The blood is taken from your arm . It is then spun . The spinning separates the platelets . The platelets are then injected into your feet. I have had 3 sets of these injections . My feet are no longer cold . I also had a PRP injection in a very painful right shoulder . The injection in my right shoulder has helped with the pain . The shoulder is now about 80 % better . I saw a DR. Richard Arness at Sanford Health in Fargo ND . He is a podiatrist at Sanford . This may not help someone else like it helped me . We are all different . Never give up or given in . I have good days and bad days . I wish you all the best on your PN journey .

carolinlv | @carolinlv | Oct 27 10:27pm

In reply to @kbirchem "I took rosuvastatin for a couple of years . I was not a diabetic before taking..." + (show)

Totally unrelated to statins, but I took another prescribed medication (gabapentin) A few weeks ago, and it put me so out of it that I fell in my bathroom in the middle of the night and sustained an L1 compression fracture. I can’t believe how much information is not shared about the medications we are prescribed. I have so many bottles on my counter right now with this new injury after my hospital release. It’s ridiculous! Quality of life is down the drain with all of this stuff! I will be stuck in bed for I don’t know how long, and all because I was overprescribed. And in all likelihood unnecessarily prescribed, according to all the physicians in the hospital. Thanks for the response and I’m really sorry for what you’re going through. The overuse of pharmaceuticals is out of control! Good luck to you!