1. < Neuropathy

Can Neuropathy be cured?

Posted by catstx @catstx, Sep 8, 2021

I’ve had P. neuropathy for 30 years. Just recently I’ve better controlled my blood sugar. So, I’m wondering if Neuropathy ever goes away, Or, if once the nerves are dead they’re just dead

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

pacodennis | @pacodennis | Sep 9, 2022
In reply to @medman18 "Has anyone used the 525 protocol for treatment for neuropathy and what is the costs per..." + (show)
@medman18

Has anyone used the 525 protocol for treatment for neuropathy and what is the costs per month?
THanks Jack Buchter

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$8 a day. Approx...$250 month. Too much for me.

REPLY
NJ Ed | @njed | Sep 9, 2022
In reply to @dbeshears1 "My Neuropathy started with some unusual leg heaviness and weakness, worsening until I fell and could..." + (show)
@dbeshears1

My Neuropathy started with some unusual leg heaviness and weakness, worsening until I fell and could no longer walk less than 3 weeks later. I had been admitted to the hospital 2 days before my last step as they were trying to figure it out. After a month in rehab facility, then 5 months of home then outpatient PT and OT, I gained enough strength and balance back to walk with walker, and even unassisted for short distances on flat surfaces. I get as much PT as I can each year to continue strength and balance as the brain is a very tricky thing with change.
A difference that you and I have is that I haven’t had an MRI, but had nerve conduction study/EMG that showed severe axonal sensory loss idiopathic PN. The doctor said there was no need for further tests since that’s what it showed. I have so many similarities with folks on here who have SFN, who say it is diagnosed by a skin biopsy and doesn’t show up in the nerve conduction/EMG tests. Have you had a skin biopsy?

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Just saw this post. I too have same dx as you and Mayo did not do a skin biopsy and when I asked about that being somewhat a conclusive proof, I was told that with all the tests they did, a skin biopsy was not needed because the tests were sufficient to offer my diagnosis: axonal PN. Based on that, I was lead to believe not all cases require biopsy.

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 9, 2022
In reply to @medman18 "Has anyone used the 525 protocol for treatment for neuropathy and what is the costs per..." + (show)
@medman18

Has anyone used the 525 protocol for treatment for neuropathy and what is the costs per month?
THanks Jack Buchter

Jump to this post

Hi Jack @medman18, I've used the 525 protocol product since 2016 before it became a product when we ordered the individual supplements through Amazon and direct from some manufacturers sites. I shared my neuropathy journey in another discussion here:
-- Member Neuropathy Journey Stories: What's Yours?
https://connect.mayoclinic.org/comment/310341/

A 30 day supply is $220 ($7.33/day).

FYI... You will notice that we removed your email address to protect your privacy since Connect is a public forum. Members can share contact information using the private message function of Connct.

REPLY
medman18 | @medman18 | Sep 9, 2022

Hello John, thanks for taking the time to answer my question, I was just recently diagnosed with Neuropathy and am starting to tingle on the bottom of my feet. No pain yet. Got my fingers crossed. I have just had a shitty two years—prostate cancer, stroke, balance problems, and now Neuropathy. Most of my problems came after I had one or two strokes. I found your story about the Protocol interesting and thanks for sharing. I copied it
and will now keep it in my Neuropathy folder. I hope you continue to do well.
Jack

REPLY
1 reply
cyn17 | @cyn17 | Sep 10, 2022
In reply to @dbeshears1 "My Neuropathy started with some unusual leg heaviness and weakness, worsening until I fell and could..." + (show)
@dbeshears1

My Neuropathy started with some unusual leg heaviness and weakness, worsening until I fell and could no longer walk less than 3 weeks later. I had been admitted to the hospital 2 days before my last step as they were trying to figure it out. After a month in rehab facility, then 5 months of home then outpatient PT and OT, I gained enough strength and balance back to walk with walker, and even unassisted for short distances on flat surfaces. I get as much PT as I can each year to continue strength and balance as the brain is a very tricky thing with change.
A difference that you and I have is that I haven’t had an MRI, but had nerve conduction study/EMG that showed severe axonal sensory loss idiopathic PN. The doctor said there was no need for further tests since that’s what it showed. I have so many similarities with folks on here who have SFN, who say it is diagnosed by a skin biopsy and doesn’t show up in the nerve conduction/EMG tests. Have you had a skin biopsy?

Jump to this post

I had an EMG which showed nothing. My doctor wasn't satisfied and sent me for an SFN biopsy. That test showed positive SFN. I see my pain mgmt doc in 4 days to discuss meds. I'm on 75 mg pregablin 3x/daily, oxycodone 5mg, baclofen 5mg/3x daily. I take mirtazapine 15mg at bedtime to help me sleep.

REPLY
1 reply
Debbie | @dbeshears1 | Sep 10, 2022
In reply to @njed "I didn't see your comment until this morning. I have "medium" spinal stenosis increased narrowing in..." + (show)
@njed

I didn't see your comment until this morning. I have "medium" spinal stenosis increased narrowing in the L-4 to S-1 area and I have tried to convenience the neuro docs that my lower back issues could be cause of PN. The more my lower back becomes painful in past 3 - 4 years, the more numbness increased over same time. No connection? Just a coincidence? Here is where I get these stunned looks ..like what?...from 3 nuro docs... when I simply touch the lower spine area, sitting or standing, I get these kind of chills in ankles and increased feeling across bottom of feet. It lasts 2 seconds. Strange feeling and no answers provided. Oddly enough, I' ve heard from several sources that doctors are trained to and basically agree to this oath "to cause no harm" and I think in some cases, if a surgeon knows for certain they can't promise improvement. they will do nothing. So, no connection between lower spine and numbness? I'm told it can contribute to the numbness but not the cause. Tough to swallow that pill but for now, I have no choice.

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@njed - I too have had lower back pain, that seems to have increased the past 2 years along with the numbness/parenthesis. (another twinning moment for us). I too have discussed with my Neurologists, who have dismissed the relationship. Isn’t it hard to have our ideas rejected when they have no ideas of their own to offer? I know I’ve repeated several times that they won’t do an MRI, and part of my desire for one is because of the lower back issues for years. Not enough for pain killers, but enough for discomfort and sleeping interference. Neurologists have told me I should try chiropractor or orthopedic help. But, I’m trying to stay positive and keep on top of therapies and life improvement techniques.

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1 reply
fisbo | @fisbo | Sep 10, 2022

From what I have been told there is no cure which is hugely depressing. I am seeking a second opinion with neurology because I am sure this is related to my back spine area. It is best to exhaust all possibilities I am even going to a foot clinic.

REPLY
fisbo | @fisbo | Sep 10, 2022
In reply to @medman18 "Hello John, thanks for taking the time to answer my question, I was just recently diagnosed..." + (show)
@medman18

Hello John, thanks for taking the time to answer my question, I was just recently diagnosed with Neuropathy and am starting to tingle on the bottom of my feet. No pain yet. Got my fingers crossed. I have just had a shitty two years—prostate cancer, stroke, balance problems, and now Neuropathy. Most of my problems came after I had one or two strokes. I found your story about the Protocol interesting and thanks for sharing. I copied it
and will now keep it in my Neuropathy folder. I hope you continue to do well.
Jack

Jump to this post

Interesting that the neuropathy occurred after your having strokes. I truly wonder whether small ones that go unnoticed could also cause it. I have it in my feet and up my legs quite bad the medication is useless and so am I with this. It makes you incapable of doing normal tasks.

REPLY
1 reply
medman18 | @medman18 | Sep 10, 2022
In reply to @fisbo "Interesting that the neuropathy occurred after your having strokes. I truly wonder whether small ones that..." + (show)
@fisbo

Interesting that the neuropathy occurred after your having strokes. I truly wonder whether small ones that go unnoticed could also cause it. I have it in my feet and up my legs quite bad the medication is useless and so am I with this. It makes you incapable of doing normal tasks.

Jump to this post

Fisbo, are you taking Protocol 525

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1 reply
fisbo | @fisbo | Sep 10, 2022
In reply to @medman18 "Fisbo, are you taking Protocol 525" + (show)
@medman18

Fisbo, are you taking Protocol 525

Jump to this post

No not sure on that one.

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