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.

@seadog

To continue...
My new neurologist determined I have nerve problem (it is sick) and sent me to a RHEUMATOLOGY for an appointment.
Rheumatology specialist doctor after reading my test results said I have Neuropathy and they treat it here in this hospital with 70% success rate!
I was in 7th heaven, finally my imbalance problems may get treated!
I was prescribed infusion of IMMUNOGLOBULIN 80 mg twice a month since February 2024 with no noticible improvements in my balance so after a few months they taught me how to administer extra doses 20 mg per week at home.
Hospital send several boxes of medical supplies syringes a pump etc... and Vials of IMMUNOGLOBULIN to my home at no charge (thank you Canadian Health System).
Sadly 10 months into treatment I don't see any I mean ANY improvements in my condition my balance hasn't improved, the only thing that I noticed is the ringing in my ears has decreased in volume and sometimes it disappears completely.
I am going to continue with this infusion of IMMUNOGLOBULIN until February 2025 and the doctor will suggest other treatment if there is still no improvement.
Tomorrow November 12, 2024 I have an appointment with private medical clinic that offers physical therapy and other treatments for Neuropathy I will keep you posted if I will sign up I need to try some additional remedies this loss of balance has ruined my life and I am not willing to give up just yet, thank you for letting me venting sharing is also a form of therapy.
Seadog

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Be careful what you choose, you will find a-lot of people on this forum have tried most of the things you will see online or in ads. Be careful most things don’t work.
Check in to Focused Ultrasound Therapy. I am trying to find someplace that is having trials on this. It’s amazing and I believe it would help anyone with Neuropathy. They are doing a lot for Parkinson right now with amazing results.
Check to see if you have any trials in your area.
Good luck

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@thetillmanthetillman

Hi iam 79 had have had it since 2019 like most folk iv tried so many things total cost prob 3000 sterling tabs nueroligists gadgets no luck but about 3 years ago I bought a pair of compresion boots for about 175 us dollars similar ones can be bought now for around half that price did nothing for me then I read that using them twice a day for 30 mons might help blood flow if bad circulation is your problem I now get 6 to 7 hours sleep say 6 nights a week which is fantastic for me I mean if we can get more sleep the day after is easier to cope with these boots do not eliminate pn but they seem 2 work for me I read once that we should all try try and try again as we might find something to at least help the quality of life you can spend 1000 dollars on the top of range no need currently on e bay and other sites 80 or so they mive the blood back up to your heart it's very important that I use them b 4 bedtime and after all we all sit in the evenings anyhow so no big effort there I just hope this info helps we go on holiday nx month and my boots although a bit bulky but lite will go with me hope this helps james n ireland

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Where did you get these boots?

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@jchet

Where did you get these boots?

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Well I bought mine from a usa co I use to but tabs to help pn I however if you Google compression boots they are on sale from around 80 to 90 sterling like everything else one can pay 10 times that but these I believe are for fit athletes mine just cover the feet and legs up 2 my knees I put them on twice a day 30 mins to 40 max per time especially helpful to me at night there are a few health warnings re people who should not use these you need to check this for yourself or your doc I hope this helps my pn is still there but not so much at night and I think it's slightly easier during g the day I also walk one hour a day and swim 30 mins good luck james

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@thetillmanthetillman

Well I bought mine from a usa co I use to but tabs to help pn I however if you Google compression boots they are on sale from around 80 to 90 sterling like everything else one can pay 10 times that but these I believe are for fit athletes mine just cover the feet and legs up 2 my knees I put them on twice a day 30 mins to 40 max per time especially helpful to me at night there are a few health warnings re people who should not use these you need to check this for yourself or your doc I hope this helps my pn is still there but not so much at night and I think it's slightly easier during g the day I also walk one hour a day and swim 30 mins good luck james

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Thank you for your quick reply!😊

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Has anyone heard of Nerve Forte to help with the pain and numbness of neuropathy? How about MMP13 enzyme that is suppose to be the root cause of neuropathy? Can't get a good nights rest due to itching and stabbing pains in feet. I have a pair of reflexology shoes that I wear in the evenings and they seem to help some. I am open to suggestions for help. Thank you, Laura Henderson

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@sh0rtie

Has anyone heard of Nerve Forte to help with the pain and numbness of neuropathy? How about MMP13 enzyme that is suppose to be the root cause of neuropathy? Can't get a good nights rest due to itching and stabbing pains in feet. I have a pair of reflexology shoes that I wear in the evenings and they seem to help some. I am open to suggestions for help. Thank you, Laura Henderson

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Welcome Laura @sh0rtie, I'm no expert and have purchased a lot of stuff that was purported to help with neuropathy but hasn't done much to help me personally. It does contain 3 ingredients that have shown to help with neuropathy and it provides a lot of research links but it doesn't provide any clinical trials or test data.

And then there is this at the bottom of their website which screams "buyer beware" to me.

"The products and information shared on this website have not been reviewed or approved by the FDA, nor have any formal clinical trials or studies been conducted. This content is not meant to diagnose, treat, cure, or prevent any medical conditions. It is provided solely for informational and educational purposes, and individual results may vary. Any use of the products or reliance on the information provided is at your own discretion, and we assume no liability for the outcomes or actions taken based on the information shared here. Webmasters have the opportunity to earn commissions by promoting and linking to nerveforte.today through the Nerve Forte Affiliate Program. This program operates like other affiliate programs, offering participants the chance to earn revenue for successful referrals. FTC Disclaimer: While we have not been paid to endorse this product, we may receive a commission if you make a purchase through one of our affiliate links."

I don't have pain with my neuropathy just the numbness and some tingling. Myself and others have share our neuropathy journey in another discussion here that you might find helpful - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

You might find these discussions helpful:
-- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/
-- Peripheral Neuropathy - Shooting Foot Pains at Night: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-shooting-foot-pains-at-night/

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