1. < Neuropathy

Supplements

Posted by jerryw @jerryw, Nov 25, 2023

Hello everyone. Has anyone here ever tried any of these supplements like, " Nuphoria ", " Nerve Renew", or R- Alpha-Lipoic-Acid". Would like to see if someone has actual experience with them. Thank you.

Interested in more discussions like this? Go to the Neuropathy Support Group.

golfgame | @golfgame | Dec 7, 2023

I started on "Nuphoria" but gave it up quickly. I also ordered their Nerve repair but trashed that after my GP said NO, She felt there was an overabundance of Vitamin E and that could cause bleeds. I can't say why but I just felt that those products fell into the Snake Oil category.

REPLY
2 replies
jerryw | @jerryw | Dec 7, 2023
In reply to @casd57 "Yes.... In Feb to July I made progress but I wasn't taking everything I listed above..." + (show)
@casd57

Yes.... In Feb to July I made progress but I wasn't taking everything I listed above plus what I was taking was wrong... like just "ALA" not R-ALA or RN-ALA ....and was taking other stuff to help blood flow but it was full of fillers that I mentioned above so that made them less effective...
So like I said in the beginning I couldn't hardly mow my lawn before I had to go lay down and grit my teeth through the pain.... Now, we just went to Disney World-Epcot-Universal 11/14 and we walked 8- 10 miles a day with short sit downs... I also noticed the last few months my feet recovered very quickly...
So yes, they are so much better...

Jump to this post

Hello casd57. Dont mean to ask you so much. But your one person that sounds positive about getting some success with supplements. Do your feet still burn today since you have been taking these supplements for some time now? I found these supplements which are very close to yours, just a few extra. Alot less pills. All supplements in 2 different pills.

REPLY
jerryw | @jerryw | Dec 7, 2023
In reply to @golfgame "I started on "Nuphoria" but gave it up quickly. I also ordered their Nerve repair but..." + (show)
@golfgame

I started on "Nuphoria" but gave it up quickly. I also ordered their Nerve repair but trashed that after my GP said NO, She felt there was an overabundance of Vitamin E and that could cause bleeds. I can't say why but I just felt that those products fell into the Snake Oil category.

Jump to this post

Thanks for reply. How long did you take it? Have you tried anything else? Have you been to Neurologist yet? Or have a EMG done?

REPLY
golfgame | @golfgame | Dec 7, 2023

About a month and a half. No on the Neurologist, Yes on the EMG, diagnosis mild/moderate PN, I actually feel that it is mild.

REPLY
1 reply
jerryw | @jerryw | Dec 7, 2023
In reply to @golfgame "About a month and a half. No on the Neurologist, Yes on the EMG, diagnosis mild/moderate..." + (show)
@golfgame

About a month and a half. No on the Neurologist, Yes on the EMG, diagnosis mild/moderate PN, I actually feel that it is mild.

Jump to this post

Thanks for reply. Did you ever find out what is causing your PN? Any blood tests or MRI to see if possibly just pinched nerve? My EMG came back no PN. My feet burn and so do my lower legs. Feet also feel like plaster in bottom of them. Weird. Probably need skin biopsy to see if Small Fiber Neuropathy. I also have the Nuphoria Gold and Nerve Defense. Just got them yesterday in mail. Wished I would have seen your review before I ordered them. I suppose I could try them.

REPLY
jerryw | @jerryw | Dec 11, 2023
In reply to @johnbishop "Hi Jerry @jerryw, There are some discussions on using spinal cord stimulators for neuropathy if you..." + (show)
@johnbishop

Hi Jerry @jerryw, There are some discussions on using spinal cord stimulators for neuropathy if you want to learn what others have shared.

--- What's your experience: Boston Scientific Spinal Cord Simulator?: https://connect.mayoclinic.org/discussion/boston-scientific-spinal-cord-simulator/
--- Comparison of Spinal Cord Stimulators from Boston Sci., Nevro: https://connect.mayoclinic.org/discussion/comparison-of-spinal-cord-stimulators-from-boston-sci-nevro/

Jump to this post

Hello John. Hope you are well. Is there any I formation on Mayo if podiatrist do small fiber neuropathy skin biopsy? I am thinking if I could rule out SFN, than maybe these burning symptoms on the bottom of my feet and on shins and calves just might be just from my back. Where are these biopsies usually done. From what I am reading, right above ankle, one by k ee, and one right below hip. I just wonder if any member on here has had a SFN Biopsy done by a Podiatrist? Thanks.

REPLY
1 reply
jerryw | @jerryw | Dec 11, 2023
In reply to @julbpat "I want to remind everybody who has a far-off appointment, it is fine to call once..." + (show)
@julbpat

I want to remind everybody who has a far-off appointment, it is fine to call once a week and check for cancellations. They happen all the time, and they would be happy to change your appointment.

I don’t think you will have any luck scheduling a skin biopsy yourself. I agree it’s the gold standard for diagnosis, and I’m sure your neurologist will schedule one. Certain doctors can do them - pain specialists, dermatologists, neurologists. But no one is going to do one without a doctors order.

Having mine and waiting for the results was a time of anxiety and impatience. But I was already on the recommended treatment - seizure meds, like Gabapentin, Lyrica and now Tegretol. That’s what missing from your treatment right now. If you are prescribed those medications, and they help, that’s another missing puzzle piece in place.

Like some others here, I don’t take supplements. I have spent a ton of money on supplements in previous years, as I tried to control my various puzzling bodily changes. Looking back - many, many years - I now recognize that I had SFN symptoms all along. Itching. Damaged ligaments from vigorous regular exercise ( that’s another story). Dizzy spells. Dry mouth and eyes. Reflux. Constipation.

I am 63. My SFN is length-dependent idiopathic. My sister and I share the same symptoms, although I am worse. Look for other family members who have had chronic pain or weakness, etc.
I take Tegretol, Baclofen (muscle relaxant), Prednisone ( when I can get my hands on some), and 1/2 of a 7.5 mg Percocet three times a day. Plus various meds for my broken digestive system.

I am so happy that researchers have worked to create drugs to help broken bodies, and that I can get relief. I often think of how horrible it must be for people without the resources to get help.

You can ask any question on this forum!

Jump to this post

Hello julbpat. Hope you are well. I asked John this question. Thought I might ask you as well. Is there any I formation on Mayo if podiatrist do small fiber neuropathy skin biopsy? I am thinking if I could rule out SFN, than maybe these burning symptoms on the bottom of my feet and on shins and calves just might be just from my back. Where are these biopsies usually done. From what I am reading, right above ankle, one by knee, and one right below hip. I just wonder if any member on here has had a SFN Biopsy done by a Podiatrist? Thanks.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 11, 2023
In reply to @jerryw "Hello John. Hope you are well. Is there any I formation on Mayo if podiatrist do..." + (show)
@jerryw

Hello John. Hope you are well. Is there any I formation on Mayo if podiatrist do small fiber neuropathy skin biopsy? I am thinking if I could rule out SFN, than maybe these burning symptoms on the bottom of my feet and on shins and calves just might be just from my back. Where are these biopsies usually done. From what I am reading, right above ankle, one by k ee, and one right below hip. I just wonder if any member on here has had a SFN Biopsy done by a Podiatrist? Thanks.

Jump to this post

I have not had a skin punch biopsy done before. My Mayo neurologist diagnosed me with idiopathic small fiber peripheral neuropathy using an EMG and a few other tests along with a physical exam. I am not sure if a podiatrist can do a skin punch biopsy. Hopefully someone with experience can answer the question.

REPLY
1 reply
madmouse43 | @madmouse43 | Dec 11, 2023
In reply to @golfgame "I started on "Nuphoria" but gave it up quickly. I also ordered their Nerve repair but..." + (show)
@golfgame

I started on "Nuphoria" but gave it up quickly. I also ordered their Nerve repair but trashed that after my GP said NO, She felt there was an overabundance of Vitamin E and that could cause bleeds. I can't say why but I just felt that those products fell into the Snake Oil category.

Jump to this post

I tried many supplements with little or no benefit. Your "snake oil" category, I think.
I am still taking the Alpha-Lipoic-Acid as my PCR said thT it had other benefits such as lowering blood sugar. She told me she takes it herself as part of her supplement regimen.

REPLY
julbpat | @julbpat | Dec 11, 2023
In reply to @jerryw "Hello julbpat. Hope you are well. I asked John this question. Thought I might ask you..." + (show)
@jerryw

Hello julbpat. Hope you are well. I asked John this question. Thought I might ask you as well. Is there any I formation on Mayo if podiatrist do small fiber neuropathy skin biopsy? I am thinking if I could rule out SFN, than maybe these burning symptoms on the bottom of my feet and on shins and calves just might be just from my back. Where are these biopsies usually done. From what I am reading, right above ankle, one by knee, and one right below hip. I just wonder if any member on here has had a SFN Biopsy done by a Podiatrist? Thanks.

Jump to this post

Any doctor who is trained can do the punch biopsies. I think podiatrists can’t, because they cannot work on anything but the foot area, per their title. I had mine done by a pain doctor who does them on a consultation basis - meaning I was not seeing him for pain, just sent there by my neurologist for the biopsy. I imagine a dermatologist would have the training and set-up to perform the biopsy.
It is standard to take three samples - ankle, knee and upper thigh. It has to be ordered by your doctor. So your doctor would know where to send you.
It’s not a complicated procedure, but like any biopsy, the sample has to be correctly prepared, sent to the appropriate lab, and then the results have to be interpreted by the doctor.

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