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.

John, Volunteer Mentor | @johnbishop | 5 days ago

In reply to @kwcoop "Hass anyone tried Rife Therapy, it is a little expensive so I thought I would ask..." + (show)

I haven't tried it but a quick search shows a few member comments on Rife Therapy - https://connect.mayoclinic.org/search/comments/?search=Rife%20therapy

dollydragon | @dollydragon | 5 days ago

In reply to @michhino "I'm 58. I am a diabetic since 2017 (A1C 8.7 - 10.7)and peripheral neuropathy started with..." + (show)

@michhino

I'm 58. I am a diabetic since 2017 (A1C 8.7 - 10.7)and peripheral neuropathy started with my feet (tingling, numb, painful nerve discomfort, etc..). Until this day(2024), I have been dealing with incurable, unmanageable, uncontrollable diabetes II and painful body peripheral neuropathy from feet, legs, waist and hands starting to become more and more numb. (especially feet) And fell 5 times as legs with dead as no longer functioned. This was the most terrifying and scary feeling as I thought became suddenly paralyzed from waist down. No feeling whatsoever! I quickly called my neighbor and was sat down on couch for hours until I started some feelings...

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (PR gabapentin/gabapentin, Juniva, Metformin, Duloxetine, etc.. I have purchased massagers, creams, and stuff on Amazon with help with PN at no avail....Sorry to say, I completely regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance) for PN not to mentioned PN. Not to mention, disability claims have been denied twice and must endure the pain at work without telling anyone...

After 8 years with such painful conditions, you DO NOT want the neuropathy (PN-nerve damage) to grow, spread and affect your entire feet, calves, thighs, waist and hands as it is an extremely terrible feeling along with an uneasy painful and frustrating state of mind, major anxiety, stress, nervousness with daily activities, etc.. And not to mention, impotent for the last 7 years and specialized doctor(s) want 20K to make you believe that they can help with it. I declined!

Sadly, advise for these serious mental and health complications and conditions were experienced as "NO CURE" ! The final solution mentioned by Neurologist was to amputate feet, and legs, and maybe hands. I could not live with myself with such a decision. I will continue to endure and suffer which I have accepted to convince mind this nasty discomfort is strictly a part of my remaining style way of my life.

As I feel discomfort and pain, I purchased a 3 year dog (German Shepherd) to help encourage, smile, and walk at least 4 times a week which helps body, muscles, and seldomly nerves. He is amazing! I seriously regret not adopting a dog many years ago...

Sadly, I found NO devices, creams, massagers, meds, specialist, doctors, etc. to ultimately eliminate nor majorly reduce the discomfort and sleepless nights of Peripheral Neuropathy not to mention diabetes II(except for short/long term insulin to lower blood sugars on a daily basis). Again, I molded and learned to ignore both awful symptoms as it has been a part of my life for years. An extremely sad way to live into your golden years.....

My advice is to eat healthy, "exercise', possibly adopt a pet for serious encouragement, and most definitely "Save your Money"…! As far as diabetes, I take insulin each day and eat healthy to help maintain blood sugars and when very low or high, PN brings out more of the dreadful and nasty pain in feet, legs and waist plus hands. And ultimately alters and brings extremely sad moments in my mind in which I try to fall asleep with sleepy pills and when at work must excuse myself some way to regain some control.........

It's likely they will remove my story cause doctors know diabetes and painful PN can not be cured !

My prayers are with all of you …

Jump to this post

Ask your doctor about Quetenza. Or Google it. It is one of the newest products for neuropathy pain. It works for me on the soles of my feet and the effects last 3 months. Then you must go to get the patch applied for the next 3 months. (You don't wear the patch. It comes off after the technician keeps it on for 40 minutes. ) Medicare pays for it. I have tried many products and it gives me a lot of relief. You will qualify, as you must be diabetic.
I am so sorry for the pain and frustration you are experiencing. Please investigate Quetenza to see if it is an option for you. I like that it is applied outside the body and does not go to the liver. I am done with all these pills that are not healthy for you.

dollydragon | @dollydragon | 5 days ago

In reply to @dollydragon "Ask your doctor about Quetenza. Or Google it. It is one of the newest products for..." + (show)

I just noticed you are 58 and not on Medicare. See if your current insurance will pay.

dclark8 | @dclark8 | 4 days ago

In reply to @biginohio "Sounds very similar to my symptoms - numb but not painful but now tingling in legs...." + (show)

I wish that some medical research facility would take on a study that would be a controlled experiment with the suggested solutions to our particular type of neuropathy, no pain associated with our neuropathy. I do not have diabetes and like you suffer with no pain. That in itself is a blessing. I take the additional vitamin B 12 over-the-counter along with stimulating the nerve endings in my feet by vigorously the bottom and tops of my feet and toes with a fork. Yes, a normal eating fork. This seems to give my nerves a instant stimulation which I perform each morning and each night. I then rub a typical over-the-counter analgesic cream and then where my socks even when I sleep. When I walk during the day, I make a conscious effort to push off with my toes as I walk forward. I am still fairly active working in my yard and, splitting wood for the winter, which requires me to walk on uneven ground, and sometimes losing my balance. However, I think this type of exercise, stimulation is good.

The problem is that there seems to be no research in a controlled atmosphere and experimentation to determine what exercises and medication's actually give without dispute, relief to peripheral neuropathy. Or, at least I have not heard of any. I am 73 years old and fine that, forcing myself to stay active, seems to be the best remedy. I am also a praying man and I believe prayer helps! Praying especially that a cure will be found and made available at an affordable price. I have been told that the inability to drive and a wheelchair are somewhere in my future.

I just read in this blog that alpha lipoic acid (ALA) has shown some promise and is available on Amazon. If my research shows there are no significant side effects, I will try this supplement.

Stay connected through this mayo, clinic site and reveal any progress that you have made. Communication is the key.

bigjohnscho | @bigjohnscho | 4 days ago

Your post echoes my thoughts very closely. There seems to be no one coming up with any solutions. WinSantor keep promising a break through but where are the results. Everything I read advocates alpha Lipoic acid, I’ve tried it and my stomach was in turmoil for days. The internet is just full of worthless scams. Why isn’t someone working on finding a solution. There are millions of sufferers with no hope ,who’s fighting for us.

heisenberg34 | @heisenberg34 | 4 days ago

In reply to @kwcoop "Hass anyone tried Rife Therapy, it is a little expensive so I thought I would ask..." + (show)

The only thing I could find online was something called a Rife machine for cancer. Is that what you are talking about?

stephencroll | @stephencroll | 4 days ago

This person has it right…exercise and supplements will slow it down.
Maybe some electrical impulse and red light..the rest is either palliative or useless. There’s no cure

SusanEllen66 | @SusanEllen66 | 4 days ago

In reply to @jakedduck1 "@SusanEllen66 Does it help numbness Jake" + (show)

@jakedduck1 it takes the edge off, but as you know, there isn’t a cure.

It helps me, and so I will continue to take it.

babse | @babse | 4 days ago

In reply to @jakedduck1 "@SusanEllen66 Does it help numbness Jake" + (show)

I have tried the typical meds for the tingling and painful sensations that stream through my body from my feet to my neck; nothing works. My empathy is with you.

SKY | @michhino | 4 days ago

In reply to @dollydragon "Ask your doctor about Quetenza. Or Google it. It is one of the newest products for..." + (show)

Hi Dollydragon,

Thank you for the response. Not many replied to the message as I initially thought for help. I do not want to give up...

Unfortunately, I am not on Medicare as I was also denied. I am not sure what else to do with this awful dreadful mental and health issues.

I will research Quetenza and since I have limited funds, I will check on affordable alternatives (if any).

Thank you!

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