Ideopathic Neuropathy - Doesn't all neuropathies have a cause?

Posted by cax75 @cax75, May 4 9:14pm

For about 20 years I have suffered with IPN in my feet - toes. It has come to my attention that all neuropathies have a cause and we will do better to treat the cause, not just the pain. I am allergic to the standard Gabopentin or Lyrica most often prescribed for the pain. How can we find out the cause of - in my case- the small fiber peripheral neuropathy?

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Profile picture for mrmacabre @mrmacabre

I wish I could say that my neuropathy was triggered by foods that I'd eaten, but most of us aren't that lucky. I have the pleasure of dealing with my pain 24/7 every single day. I've been taking the maximum dosage of gabapentin for years, along with ALA now, and the pain is only dulled, it's always there.
Just saying.

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@mrmacabre try this. It has my neuropathy 85% from chemo gone. I'm also taking Alpha lipoic acid-R 300mg daily.

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Profile picture for japanjim @japanjim

@mrmacabre Same here. Went 3 times for blood tests. One nurse took 17 vials of blood. Checked nutrients, toxins, autoimmune, even Lyme disease! Not a single problem. I used to do very heavy powerlifting, so I am concluding I damaged nerves in my back. Doctors said it's possible.

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@japanjim I worked very physical jobs for more than 35 years, plus I helped a lot of friends and family move when they needed the help, so it may be from nerves in my back as well. The reason I never considered this before is because I've never really injured my back, just the occasional pulled muscle. I drove a truck for a printing company for over 13 years, and worked for 17+ years driving a truck for a national office supply company, so I walked hundreds of miles, climbed thousands of steps while making deliveries, and climbing in and out of my company trucks. And I moved literally thousands of tons of products during that time without really hurting myself. I think my body was just worn out by the Summer of 2015 when I had to walk away from my job and "retire" on permanent disability. I have osteoarthritis and spinal stenosis in my lower back, but a neurosurgeon looked at the MRI's of my spine and doesn't think it requires any surgery. I've already had 2 spinal fusion procedures done on my neck, and having more surgery on my lower back wasn't something I was looking forward to anyway.

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Profile picture for mrmacabre @mrmacabre

@japanjim I worked very physical jobs for more than 35 years, plus I helped a lot of friends and family move when they needed the help, so it may be from nerves in my back as well. The reason I never considered this before is because I've never really injured my back, just the occasional pulled muscle. I drove a truck for a printing company for over 13 years, and worked for 17+ years driving a truck for a national office supply company, so I walked hundreds of miles, climbed thousands of steps while making deliveries, and climbing in and out of my company trucks. And I moved literally thousands of tons of products during that time without really hurting myself. I think my body was just worn out by the Summer of 2015 when I had to walk away from my job and "retire" on permanent disability. I have osteoarthritis and spinal stenosis in my lower back, but a neurosurgeon looked at the MRI's of my spine and doesn't think it requires any surgery. I've already had 2 spinal fusion procedures done on my neck, and having more surgery on my lower back wasn't something I was looking forward to anyway.

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@mrmacabre I looked at all of the possibilities, and think it is what doctors call "physical trauma." They couldn't confirm anything, but it does not matter. Can't do anything except walk and get good nutrition.

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Profile picture for japanjim @japanjim

@mrmacabre I looked at all of the possibilities, and think it is what doctors call "physical trauma." They couldn't confirm anything, but it does not matter. Can't do anything except walk and get good nutrition.

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@japanjim Even walking for short periods of time is very difficult without some kind of help. I've had a walking stick for several years that I can lean on whenever I need to take a break. My endurance and stamina are both completely gone now, after working 10-12 hours a day for decades.
It's beyond frustrating.

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Profile picture for mrmacabre @mrmacabre

@japanjim Even walking for short periods of time is very difficult without some kind of help. I've had a walking stick for several years that I can lean on whenever I need to take a break. My endurance and stamina are both completely gone now, after working 10-12 hours a day for decades.
It's beyond frustrating.

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@mrmacabre Do you have access to a pool? I wish you the best.

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After suffering a very painful attack involving my trigeminal nerve , I found from the internet that our nerves are wrapped with an insulating white fat called MYELIN . Us elders eat less animal protein, the source of B12 which makes myelin. Also our smaller stomachs have less acid which releases B12. Then of course alcohol nulls the lining of our 20 ft intestine preventing absorbsion .
My pain went away after taking B12 daily.
Good luck, James.

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Profile picture for jamessaxo @jamessaxo

After suffering a very painful attack involving my trigeminal nerve , I found from the internet that our nerves are wrapped with an insulating white fat called MYELIN . Us elders eat less animal protein, the source of B12 which makes myelin. Also our smaller stomachs have less acid which releases B12. Then of course alcohol nulls the lining of our 20 ft intestine preventing absorbsion .
My pain went away after taking B12 daily.
Good luck, James.

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@jamessaxo I've always consumed plenty of protein and have never consumed alcohol, but I still have idiopathic poly neuropathy. Why?

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Profile picture for mrmacabre @mrmacabre

@jamessaxo I've always consumed plenty of protein and have never consumed alcohol, but I still have idiopathic poly neuropathy. Why?

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If anyone knew the answer to your question, they would likely win the Noble Prize for Medicine! 30% of all neuropathy is idiopathic. I spent a week at the Mayo Clinic Rochester in June 2021 in the hopes they could find a cause for my neuropathy. They did not. I will have had this disease for 10 years in January 2026. BUT, let me say this. My burning in my feet is better. I take 60mg of Cymbalta, 100mg of Lyrica daily and low dose naltrexone for my neuropathy. I think my neuropathy is better because I have a rigid weight training programs and some cardio thrown in for good measure. I really don’t think the drugs have made a huge difference.

As you known, neuropathy treatment is solely directed toward symptom relief. Nothing out there actually reverses the damage to the nerves, so no cure is available and will likely take many years to become available, if ever. The fact that very few companies have made real progress in finding a cure after this many years is depressing.

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Profile picture for mrmacabre @mrmacabre

@jamessaxo I've always consumed plenty of protein and have never consumed alcohol, but I still have idiopathic poly neuropathy. Why?

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@mrmacabre sounds bad. I looked it up. Seems no cure. I just understand that when vit B12 is low, nerves become demyelinated from brain to toes. I take
25 micrograms daily. Has your B12 been measured. Good luck
James

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