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.

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julbpat | @julbpat | Dec 13, 2023

I’m glad you found someone to do the biopsies! Then you will have something to go forward with.

I don’t have that type of feeling in my ankles and feet, but the bottoms of my feet are very sensitive to most surfaces. A soft rug can be painful, and I have to stop and shake out my shoes if any tiny debris is in there.

I think you will soak up any information you get. Keep copies of all your results, and make sure you can access patient portals at all your doctors offices.

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dcgoebel62 | @dcgoebel62 | Dec 13, 2023

My sister has Tarlov cysts on her lower spine causing much pain. It took a year and a half to diagnose. Her neurologist at UCDavis recommended PEA (palmitolethanolamide). Which she took and it helped tremendously. He also recommended Alpha Lipoic Acid. If you take thyroid medication it may interfere with it. Both are not FDA approved.
In May 2022 after I got Covid for my first time, I got small fiber peripheral neuropathy which lasted 4 months. It still would come back if I got very stressed.the palm of my left hand our itch. In April of 2023 I got Covid again after vacationing in Scotland. Did not get PN. Then 5 weeks ago, I got my Covid vaccine( I have had all of them) and I got PN again and even worse. I started the PEA 10 days ago, and I am feeling better. I got it on Amazon. Best of luck.

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bb0753 | @bb0753 | Dec 14, 2023
In reply to @julbpat "Jerry, I have not researched a Spinal Cord Stimulator, but I don't think it would help..." + (show)
@julbpat

Jerry, I have not researched a Spinal Cord Stimulator, but I don't think it would help me. I have polyneuropathy, which means it affects nerves all over my body. I also have autonomic involvement. That would be dry mouth and eyes, dizziness, heart palpitations, itching, digestive and bladder issues - I can't think of a part of my body that isn't affected by small fiber neuropathy. It involves widespread pain and weakness, made worse by even limited overuse of my muscles - and I mean very limited use, like using a rake or broom for even 20 minutes. Fortunately I am able to treat most of this with corresponding medications - Restasis for dry eyes, Pindolol for elevated heart rate, Omeprazole for reflux that will lead to an esophageal spasm before I can stop it, etc etc. I use a small amount of Percocet, and Baclofen helps as a muscle relaxant. I go to PT for help with pain, and now OT for help with dizziness.
It's a lot. I think a lot of people with SFN just have the painful feet and limbs. Hopefully you will be in that category, if you do turn out to have SFN! But back to the Spinal Cord Stimulator - I don't think its meant for this type of polyneuropathy.

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Julbpat. Have you ever had your b6 tested. Read about b6 toxicity. Understandingb6toxicity.com might be a dead end by if you take supplements with b6 could be a problem. Many physically fit people tend to take supplements, protein drinks, energy drink with b6. B6 is known neurotoxin.

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1 reply
julbpat | @julbpat | Dec 14, 2023
In reply to @bb0753 "Julbpat. Have you ever had your b6 tested. Read about b6 toxicity. Understandingb6toxicity.com might be a..." + (show)
@bb0753

Julbpat. Have you ever had your b6 tested. Read about b6 toxicity. Understandingb6toxicity.com might be a dead end by if you take supplements with b6 could be a problem. Many physically fit people tend to take supplements, protein drinks, energy drink with b6. B6 is known neurotoxin.

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Thanks for commenting. I don’t take any supplements, and my B6 level is normal. Yes, I agree, putting something in my system daily with 1000 times the daily recommended amount has never seemed like a good idea!

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pfszakacs | @pfszakacs | Dec 21, 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...

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Do you have a complete list of what you were taking? I was diagnosed with CIDP in 2020, seems to be getting worse. Any info on diet or supplements would be greatly appreciated.

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 22, 2023
In reply to @pfszakacs "Do you have a complete list of what you were taking? I was diagnosed with CIDP..." + (show)
@pfszakacs

Do you have a complete list of what you were taking? I was diagnosed with CIDP in 2020, seems to be getting worse. Any info on diet or supplements would be greatly appreciated.

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There is a complete list of supplements shown to help neuropathy on the Foundation for Peripheral Neuropathy's website. It's at the end of this document - Complementary and Alternative Treatment: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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1 reply
jerryw | @jerryw | Dec 22, 2023
In reply to @johnbishop "There is a complete list of supplements shown to help neuropathy on the Foundation for Peripheral..." + (show)
@johnbishop

There is a complete list of supplements shown to help neuropathy on the Foundation for Peripheral Neuropathy's website. It's at the end of this document - Complementary and Alternative Treatment: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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Thank u John. Have a Merry Christmas.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 7 11:52am

Hi @tessie63, I thought I would tag you in this discussion rather than take the other discussion off-topic. I don't put much faith in any supplement I see advertised on Facebook.
--- Supplements: https://connect.mayoclinic.org/discussion/supplements-4/

@jerryw may also have some thoughts on Nerve Shield Pro but for me, I prefer to do my own research and rely on credible studies before starting any supplement.

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kbirchem | @kbirchem | Jan 7 10:25pm

I take R alphalioic acid . I take 600 mgs 3 times daily . Neuphoria gold is a joke . Stay away from it .

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1 reply
daj3333 | @daj3333 | Jan 8 6:49pm
In reply to @kbirchem "I take R alphalioic acid . I take 600 mgs 3 times daily . Neuphoria gold..." + (show)
@kbirchem

I take R alphalioic acid . I take 600 mgs 3 times daily . Neuphoria gold is a joke . Stay away from it .

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How much relief do you get from RALA?

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