1. < Neuropathy

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.

thighirritationno1 | @thighirritationno1 | Jul 26 8:10am

The Webinar guys treatment programs after their initial webinars
are shockingly expensive !!
And NOT COVERED BY ANY INSURANCE!!
They offer ‘finance’ programs to help
you pay for these treatment programs..WHICH EASILY SURPASS
the FIVE FIGURE AMOUNT!

Or they want the money up front!
Or THEY OFFER A ONE DAY DISCOUNT IF YOU SIGN UP ON THAT DAY!!

AND THEY OF COURSE NEVER SEE
YOU IN PERSON!

AT THIS POINT NO THANKS..

I am self recommending to get further x rays to find out perhaps
the source of my nerve irritations
soon..
How most chiropractors work without the use of x-rays mystifies
me.
Truly

REPLY
thighirritationno1 | @thighirritationno1 | Jul 26 8:12am

Yes further comments from supplement tryers would be very very revealing for us all!!
Great suggestions!

REPLY
thighirritationno1 | @thighirritationno1 | Jul 26 8:30am
In reply to @davidhpress "I have been dealing with non-diabetic neuropathy for 20 years. In the last 4 years or..." + (show)
@davidhpress

I have been dealing with non-diabetic neuropathy for 20 years. In the last 4 years or so, I’ve pretty aggressively tried many supplements and prescription drugs.

My results:

Lyrica helps more than anything else. Benfotiamine helps some and Alpha-Lipoic 700 mg from Nuturna (not cheap so I switched to Benfotiamine, one of its main ingredients) has been very helpful.

Lion’s Mane did nothing, acetyl l-carnitine did nothing, NAC did nothing.

The above were all recommended by people, all were mentioned on this forum.

That said, some things work for some people and not for others.

Non-drug therapy:

I have begun spinal decompression therapy with my chiropractor. It is not at all painful and after the first 2 weeks with 5 visits a week, my lower legs have feeling, I can step into a shower and feel the temperature on my feet for the first time in 20 years and I have feeling in the bottom of my feet for the first time in 20 years. Some foot tingling is still there which I hope will go away with continued decompression. I began the decompression not knowing if insurance would pay any of it but it has become clear that it is something that works extremely well for me and may help me stop my drug therapy. This doesn’t mean that it will work for you or work this quickly. My chiropractor tells me that what has changed for me in two weeks usually takes about a year. I’m extremely happy with how things are progressing and will stick with it to try to eliminate all tingling. To be continued.

Jump to this post

Extremely helpful feedback..
Keep the comments about your spinal decompression treatments
coming as you continue!
Thanks again!

REPLY
persistentc | @persistentc | Jul 26 9:19am
In reply to @daves2 "Under scams Anyone tried nooro ultimate foot massager SCAM?Anyone tried the nooro ultimate foot massager they..." + (show)
@daves2

Under scams Anyone tried nooro ultimate foot massager SCAM?Anyone tried the nooro ultimate foot massager they claim it works wonders Been trying it for 5 days now nothing so far 15minutes a day twice.

Jump to this post

I tried it and sent mine back. No help at all.

REPLY
persistentc | @persistentc | Jul 26 9:23am
In reply to @kbirchem "I bought one . It did not work right from the start . I threw it..." + (show)
@kbirchem

I bought one . It did not work right from the start . I threw it away the same day that I got it . KTB

Jump to this post

same here

REPLY
davidhpress | @davidhpress | Jul 26 10:35am

On days when my feet are particularly tingly or burning, I put on a pair of Darn Tough socks. They seem to have just the right amount of compression to help a lot.

REPLY
skip | @skipneuroathy | Jul 26 1:04pm
In reply to @holdrege "My Home Health nurse swears by a product called Cool Cayenne sold on Amazon for very..." + (show)
@holdrege

My Home Health nurse swears by a product called Cool Cayenne sold on Amazon for very reasonable price. He says that he has seen big improvements in his neuropathy patients and even more serious situations over his career.

Jump to this post

In general I have found (usually by anecdotal reports) that any "cure" that "guarantees" a cure is a gross exaggeration (I hesitate to say scam, but.....). I have been reading these reports for a number of years.

REPLY
skip | @skipneuroathy | Jul 26 1:15pm

Some time ago, I saw an ad for "diabetic socks". Since neuropathy often follows diabetes and since they are inexpensive, I ordered set from Amazon. After using them for awhile, including going to bed with them on, I have ordered two more sets. I have found they have a helpful amount of compression . Good luck.

REPLY
1 reply
rybren | @rybren | Jul 26 4:28pm
In reply to @davidhpress "I have been dealing with non-diabetic neuropathy for 20 years. In the last 4 years or..." + (show)
@davidhpress

I have been dealing with non-diabetic neuropathy for 20 years. In the last 4 years or so, I’ve pretty aggressively tried many supplements and prescription drugs.

My results:

Lyrica helps more than anything else. Benfotiamine helps some and Alpha-Lipoic 700 mg from Nuturna (not cheap so I switched to Benfotiamine, one of its main ingredients) has been very helpful.

Lion’s Mane did nothing, acetyl l-carnitine did nothing, NAC did nothing.

The above were all recommended by people, all were mentioned on this forum.

That said, some things work for some people and not for others.

Non-drug therapy:

I have begun spinal decompression therapy with my chiropractor. It is not at all painful and after the first 2 weeks with 5 visits a week, my lower legs have feeling, I can step into a shower and feel the temperature on my feet for the first time in 20 years and I have feeling in the bottom of my feet for the first time in 20 years. Some foot tingling is still there which I hope will go away with continued decompression. I began the decompression not knowing if insurance would pay any of it but it has become clear that it is something that works extremely well for me and may help me stop my drug therapy. This doesn’t mean that it will work for you or work this quickly. My chiropractor tells me that what has changed for me in two weeks usually takes about a year. I’m extremely happy with how things are progressing and will stick with it to try to eliminate all tingling. To be continued.

Jump to this post

Nice to hear something is working. Can you describe decompression treatment? What’s involved with this approach. Would love to know more. I have complete idiopathic PN. Tried everything. Been tested for everything I know about. Seems like trying something else is worth it but lots of snake oil out there. Appreciate any color. Thank you

REPLY
1 reply
carolinlv | @carolinlv | Jul 27 9:32am
In reply to @bigjohnscho "My GP has taken me off statins due to my peripheral neuropathy. I am waiting to..." + (show)
@bigjohnscho

My GP has taken me off statins due to my peripheral neuropathy. I am waiting to see what alternative he offers. Has anyone experienced this

Jump to this post

What do statins do to peripheral neuropathy?

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.