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.

If you’re concerned as to whether a product is effective or not look to the FDA for approval of clinical trial validation of the product. The true test is a Phase III clinical trial that was double blinded so that neither doctor or patient knew what a patient was given. As an example currently PRP or plasma and a high concentration of platelets which many docs are hawking patient patients. No Phase III study has proved it works as yet except in bone grafting while other uses are considered investigational and no covered by insurance.

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I have had Neuropathy for 4 + years. Knee Surgeon made diagnosis when I asked why feet tingled. Internist said it was a nuisance- and finally gave prescription for 100 mg and sent me to Neurologist. He says there many people will take your money. After insisting I was aggressively searching for results he told me me: order EB-N3 -which is an enhanced B6 B12 (EBM Medical, LLC Chesterfield, MO 63005 1-636-614-3152 /requires Doctor's Prescription) and possibly Scrambler Pain Therapy aka Calamare. New England Medical Journal indicates it may be beneficial.) Found provider in Chandler AZ and went for initial evaluation for $59 or $100). Evaluated and hooked me up to the Scrambler for 1/2 hour and light therapy. Immediately reduced pain for few days/ Prescribed treatment: 5 1 hr sessions for 2 weeks may be effective for months or longer. $200-250 per session. Couldn't pursue as headed to MT for summer. Expected to get MRI for Back Pain in MT, but can't get in to an MD until 8/9/24. Pain drove me to a Chiropractor who also specializes in Neuropathy. His treatment: Rebuilder (similar to Tens), RED LIGHT -LZR UltraBright LZRUltraBright.com, foot vibrator, Supplements: Fenix, A-KLM Cream, Zan-Mag, N-Acetyl-L-Cysteine, Alpha Lipoic Acid +Acetyl L-Carnitine, Omega +D, ZAN-MAG Magnesium, and two office visits per week. After 4 days results unknown. Barely feel electrical stimulation. This is where I my be throwing money away/ but back pain weekend my resolve. Summary: Scrambler replaces Gabapentin and blocks nerve pain to brain; not a cure) MT Chiropractors program presented to rebuild blood vessels and nerves - partially curing neuropathy. P.S. I tried to go to Phoenix Mayo but they denied me because my insurance is UHC Medicare Advantage (PPO)

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I find that. even w/some supplements there can be hidden allergies that are not apparent at the beginning of using them but after time this can happen. After taking alpha lipoic acid for a year or more my lips started swelling. Scary

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I have not been officially diagnosed with peripheral neuropathy, however, I have persistent tingling in my toes. As a result of my acupuncture treatments for postherpetic neuralgia from shingles, I have experienced far less tingling in my feet. Perhaps acupuncture is something you might like to pursue for your neuropathy. I wish you well.

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I'll start my message with :
"What works for me, may not work for others and what works for them , may not work for me.".
I have had chemo induced neuropathy since 2013; for 11 years. I have not tried nor will I try any of these so called pain relievers or pain curers using some kind of machine sold by the electronic-snake-oil salespersons.
I have never tried any homeopathic meds. My only meds are doctor prescribed.
I have done much research, most of it anecdotal, and have come to agree with long-term sufferers as well as many medical folks, that, THERE IS NO MURE FOR NEUROPATHY!". It is up to you and your doc to try to establish a routine that offers you the best sleep, least pain and balance relief. I have found a
Tylenol-Tramadol-time regium that helps me for most of the time. I'll end with a list of my failed attempts for relief; gabapentin - Google "Side effects of Gabapentin on line (I had 3 of them, the worst double vision)
Tylenol by itself - the maximum you should take is 4 grams (4000mg) per 24-hours )
Vicodin - another opiate that might cause you to use too much of it
DO NOT TAKE ANY OPIATE, VIDPODINE OR TRAMADOL,
WITH AMBIEN OR ANY OTHER SLEEP-MED.).
We are smart animals, so do not fight a dead cause, rather cope wity it and keep smiling!

(talk with your doc and/or pharmacist about this mixture.)

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@skipneuroathy

I'll start my message with :
"What works for me, may not work for others and what works for them , may not work for me.".
I have had chemo induced neuropathy since 2013; for 11 years. I have not tried nor will I try any of these so called pain relievers or pain curers using some kind of machine sold by the electronic-snake-oil salespersons.
I have never tried any homeopathic meds. My only meds are doctor prescribed.
I have done much research, most of it anecdotal, and have come to agree with long-term sufferers as well as many medical folks, that, THERE IS NO MURE FOR NEUROPATHY!". It is up to you and your doc to try to establish a routine that offers you the best sleep, least pain and balance relief. I have found a
Tylenol-Tramadol-time regium that helps me for most of the time. I'll end with a list of my failed attempts for relief; gabapentin - Google "Side effects of Gabapentin on line (I had 3 of them, the worst double vision)
Tylenol by itself - the maximum you should take is 4 grams (4000mg) per 24-hours )
Vicodin - another opiate that might cause you to use too much of it
DO NOT TAKE ANY OPIATE, VIDPODINE OR TRAMADOL,
WITH AMBIEN OR ANY OTHER SLEEP-MED.).
We are smart animals, so do not fight a dead cause, rather cope wity it and keep smiling!

(talk with your doc and/or pharmacist about this mixture.)

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Hi Skip: I'm impressed with the research you have done and also with the criteria you have developed.
One question: Did you experience double vision with gabapentin. I'm been on 900 mg gabapentin at night for years and I do have double, or triple, or quadruple vision. My glasses correct for it. I went off gabapentin, tapered off, for about a month and it made no change in my vision. Are the vision changes with gabapentin permanent or aret they reversible or partially reversible?
I totally agree: We are smart animals; therefore, there is no point in fighting a dead cause. Learn to cope with it and try to keep smiling! Amen!

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After getting to the point when I was taking 3200 mg of gabapentin daily, I told my doc. about double vision. He had me gradually reduce the daily amount until I was raking no gabapentin at all. That took about a month. As I reduced the dosage, the double vision gradually faded until I have it no more. My brother was also taking it at the same time as I was and he did not have the same side effect' My best wishes to you to get your vision back. Your concluding statement tells me that you are a person who will deal with neuropathy as best as you are able. GOOD LUCK!!

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@ramona51

I have not been officially diagnosed with peripheral neuropathy, however, I have persistent tingling in my toes. As a result of my acupuncture treatments for postherpetic neuralgia from shingles, I have experienced far less tingling in my feet. Perhaps acupuncture is something you might like to pursue for your neuropathy. I wish you well.

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Thanks when I am back to Phoenix I may pursue acupuncture after scrambler Therapy (which has some scientific basis)

I saw add for an Arizona Chiropractor for accupuncture but she did not seem to have any references

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@bigjohnscho

Is Pirenzepine approved in the USA. Has anyone tried it and what were the results. I’ve read quite a lot about it and it seems to be the first medication that offers a cure.

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From what I've read, pirenzepine is still in the final study stages. The drug itself had been around for gastric issues for a long time, but the topical form for neuropathy isn't approved yet.
I hope we see something soon.

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@skipneuroathy

I'll start my message with :
"What works for me, may not work for others and what works for them , may not work for me.".
I have had chemo induced neuropathy since 2013; for 11 years. I have not tried nor will I try any of these so called pain relievers or pain curers using some kind of machine sold by the electronic-snake-oil salespersons.
I have never tried any homeopathic meds. My only meds are doctor prescribed.
I have done much research, most of it anecdotal, and have come to agree with long-term sufferers as well as many medical folks, that, THERE IS NO MURE FOR NEUROPATHY!". It is up to you and your doc to try to establish a routine that offers you the best sleep, least pain and balance relief. I have found a
Tylenol-Tramadol-time regium that helps me for most of the time. I'll end with a list of my failed attempts for relief; gabapentin - Google "Side effects of Gabapentin on line (I had 3 of them, the worst double vision)
Tylenol by itself - the maximum you should take is 4 grams (4000mg) per 24-hours )
Vicodin - another opiate that might cause you to use too much of it
DO NOT TAKE ANY OPIATE, VIDPODINE OR TRAMADOL,
WITH AMBIEN OR ANY OTHER SLEEP-MED.).
We are smart animals, so do not fight a dead cause, rather cope wity it and keep smiling!

(talk with your doc and/or pharmacist about this mixture.)

Jump to this post

What is your Tylenol-Tramadol regiment? Am taking 50 pregabalin in morning and 125 at night; but, still have to take Tramadol.
Thanks

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