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.

bigjohnscho | @bigjohnscho | May 6 11:19am

Sadly I have come to the conclusion that GP’s no very little about neuropathy mine just advised me to just live with it. I have been forced to resort to the internet.
I have to admit that the information on the internet is very good but there is the danger of doing more harm than good but it at least makes yo feel as if your doing something.
Does anyone take vitamin B12 and folate on a regular basis and at what dosages.

REPLY
1 reply
fncz | @fncz | May 6 1:04pm
In reply to @bowersra "I have had a skin punch biopsy showed small fiber neuropathy I am new to talking..." + (show)
@bowersra

I have had a skin punch biopsy showed small fiber neuropathy
I am new to talking about this. But have had neuropathy for at least 12 years.
Doctor does not understand what we go through

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Same here. It’s got worse over years.

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pdrago1955 | @pdrago1955 | May 6 2:21pm
In reply to @bowersra "I live near a great place to fine the nutritional supplements, as it has help with..." + (show)
@bowersra

I live near a great place to fine the nutritional supplements, as it has help with my fatigue, I see no change in the overall neuropathy, not saying other may find help I did not….
What I need is a doctor who will find out what I have, if there a cause and if it is all SFN, or damage from the SFN, or other things..
I get tried of these doctor wanting us to go to pain management with out knowing all…
I know that there is more going on with my feet and legs, and don’t want to take things that put you to sleep…
And believe me many of the nutrients, pills and injections..can do more harm than good…
I have learned even with vitamin you can do more harm thawing to much or the ones that should not be taking together…
I need a doctor who listen…understands

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Hello bowersra.....
If you like I can refer you to this doctor.
I am going to start a few sessions of Decompression bed treatments which lightly stretches your spine to separate the discs to allow the nerves to transmit normally again.

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1 reply
bowersra | @bowersra | May 6 2:25pm
In reply to @bigjohnscho "Sadly I have come to the conclusion that GP’s no very little about neuropathy mine just..." + (show)
@bigjohnscho

Sadly I have come to the conclusion that GP’s no very little about neuropathy mine just advised me to just live with it. I have been forced to resort to the internet.
I have to admit that the information on the internet is very good but there is the danger of doing more harm than good but it at least makes yo feel as if your doing something.
Does anyone take vitamin B12 and folate on a regular basis and at what dosages.

Jump to this post

I take a b12 2000mg every day with my vitamin D3
I was told that B6 is bad for neuropathy from a specialist in IU Medical in Indianapolis…. So stop the B complex
Not sure if it helped I had taken the B’s together for 3 or 4 years…
Only take B12 now…
Want to try the B12 shot, I need a primary doctor than understand or will listen to neuropathy…
Neurologist I had was some what ok but couldn’t move on anything.. took him 1 1/2 years to get a skin punch

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bowersra | @bowersra | May 6 2:27pm
In reply to @pdrago1955 "Hello bowersra..... If you like I can refer you to this doctor. I am going to..." + (show)
@pdrago1955

Hello bowersra.....
If you like I can refer you to this doctor.
I am going to start a few sessions of Decompression bed treatments which lightly stretches your spine to separate the discs to allow the nerves to transmit normally again.

Jump to this post

Where is this doctor

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kwcoop | @kwcoop | May 6 2:51pm
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.

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as far as I am concerned it is a scam, I have had better luck with a product called power plate it seems to kind of even out the level so I can get on with my life.

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mlee5309 | @mlee5309 | May 6 3:38pm

I would love to know if anyone has tried hyperbaric chamber sessions for neuropathy. I am out of ideas but I’ve never tried this or seen ir mentioned. Probably a scam but I’m desperate enough to fall for any scam at this point

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2 replies
oliviaflickamay | @oliviaflickamay | May 6 3:56pm

Perfect request. Thank you. I stopped my statin to see if both my legs respond by relinquishing moderate numbness during sleep hours. After a month or two there is improvement.

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mlee5309 | @mlee5309 | May 6 3:59pm
In reply to @rlh "I liken trying to find something that helps my neuropathy to playing whack a mole at..." + (show)
@rlh

I liken trying to find something that helps my neuropathy to playing whack a mole at a carnival. Sometimes it seems the target keeps moving. I’ve tried so many things it’s hard to keep track of them all.

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Have you ever tried a hyperbaric chamber? I can’t find any personal anecdotes of anyone who has for neuropathy

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3 replies
rlh | @rlh | May 6 6:03pm
In reply to @mlee5309 "Have you ever tried a hyperbaric chamber? I can’t find any personal anecdotes of anyone who..." + (show)
@mlee5309

Have you ever tried a hyperbaric chamber? I can’t find any personal anecdotes of anyone who has for neuropathy

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I have not.

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