Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2, 2024

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

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.

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I take one 1,000 mcg B12 tablet and one 100 mg B1 tablet a day. Four years ago I started on 300 mg of Gabapentin at night and now I take 1,200 to 1,400 mg every night, and 100 to 200 mg during the day as needed but that’s usually only a few times a month.

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I also use an Aspercreme w Lidocaine roller every night. I roll it in between my toes, on my heels, and along the bottom of my feet. Then I put on regular ankle socks.

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Thank you so much Chrisananon in replying with such useful information.

You too &
God bless

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Honestly, I’m 77. My brain still feels and works like I’m 30. However my body feels more like 100. I walk with a cane. I have poor balance. The neuropathy started when I was 63. Now the neuropathy is severe from my hips to my toes. Nerve conduction tests revealed that every nerve in my body is inflammed. Although, no damage. Next step was as spinal tap. Came back negative. Next step lidocaine infusion. 4 weeks in a row. Four hrs each weekly visit. Now 15 years later I can’t exercise at all. Can’t walk or bike ride. Everything out there is a scam. I have a very good Dr and prescription regimen daily. So I have a functional life during the day. But suffer more at night. Then it’s ice pack time.

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@rich12019

Honestly, I’m 77. My brain still feels and works like I’m 30. However my body feels more like 100. I walk with a cane. I have poor balance. The neuropathy started when I was 63. Now the neuropathy is severe from my hips to my toes. Nerve conduction tests revealed that every nerve in my body is inflammed. Although, no damage. Next step was as spinal tap. Came back negative. Next step lidocaine infusion. 4 weeks in a row. Four hrs each weekly visit. Now 15 years later I can’t exercise at all. Can’t walk or bike ride. Everything out there is a scam. I have a very good Dr and prescription regimen daily. So I have a functional life during the day. But suffer more at night. Then it’s ice pack time.

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Hi, rich12019 (@rich12019)

I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance. The invisible onset of my PN was 10-12 years ago, but I wasn't given an "official" diagnosis until August 2022. That's when I started reading up on PN. That's also when I began to be bombarded with scam come-ons. Fortunately, I managed to duck the come-ons. An honest, caring neurologist and on-and-off PT have kept my PN at bay––plus a sepsis infection, which put me in conversation with a new team of specialists (infectious disease), instilling in me the value of good nutrition. I can still hear those specialists saying, 'Protein, protein, protein!' 🙂

I wish you the very best of the New Year!
Ray (@ray666)

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Did anyone here tried ReBuilders devise for neuropathy?
Them site shows good testimonials...
https://rebuildermedical.com/

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@valyruss

Did anyone here tried ReBuilders devise for neuropathy?
Them site shows good testimonials...
https://rebuildermedical.com/

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Here are member discussions and comments on the Rebuilder - https://connect.mayoclinic.org/search/?search=rebuilder

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Any neurofeedback already offered as of now is most likely charlatanry and not built on scientific ground. It's easy for psychiatrists and neurologists to make some easy money.

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@horowitz71

Any neurofeedback already offered as of now is most likely charlatanry and not built on scientific ground. It's easy for psychiatrists and neurologists to make some easy money.

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It depends on everyone's situation..I was diagnosed with SFN three years ago which aggravated to the point of having difficulty walking...Finally I found a clinic offering Sanexas treatment and after three month along with some other life changes- I'm healed 70%...
Now I'm looking for a devise as a maintenance only.

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@rich12019

Honestly, I’m 77. My brain still feels and works like I’m 30. However my body feels more like 100. I walk with a cane. I have poor balance. The neuropathy started when I was 63. Now the neuropathy is severe from my hips to my toes. Nerve conduction tests revealed that every nerve in my body is inflammed. Although, no damage. Next step was as spinal tap. Came back negative. Next step lidocaine infusion. 4 weeks in a row. Four hrs each weekly visit. Now 15 years later I can’t exercise at all. Can’t walk or bike ride. Everything out there is a scam. I have a very good Dr and prescription regimen daily. So I have a functional life during the day. But suffer more at night. Then it’s ice pack time.

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I’m in the same situation as you.
My neuropathy started when I was 60, which was 12 yrs ago.
My balance is awful, can’t walk without a cane or walker, and I need a wheelchair because I can’t walk long distances anywhere.
I can’t even find shoes that are comfortable to walk in,as they hurt daily.
Some days I’m at my wits end with the pain, and I take Tramadol 2 tabs daily along with Ibuprofen for pain relief.
None of the many neurologists that I’ve had over the years, has helped me.
I’ve also been on Gabapentin 2400 mg daily for few years, and it did not work for my pain and numbness.
Also have been on many of the routine neuropathic drugs over the years, with no relief from them either.

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