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Idiopathic Neuropathy - Don't all neuropathies have a cause?

Posted by cax75 @cax75, May 4, 2025

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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armywac | @armywac | Apr 12 4:35pm

Mine is caused from 3 things. I was exposed to Agent Orange and I worked in an Iron Foundry and I developed film back in the days when it was done in chemical trays. Think about any chemicals you have been around. They affect your nerves and muscles.

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mrmacabre | @mrmacabre | Apr 13 1:24pm
In reply to @jamessaxo "@mrmacabre Alcohol dulls the tips of our intestine villi. So no B12 is absorbed even though..." + (show)
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@mrmacabre
Alcohol dulls the tips of our intestine villi. So no B12 is absorbed even though u take plenty.
Do look up " alcohol B12"

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@jamessaxo I don't drink, and never have.

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jchet | @jchet | Apr 23 8:41pm
In reply to @cax75 "Thank you so much for replying to my post. Sounds like you have been through a..." + (show)
Profile picture for cax75 @cax75

Thank you so much for replying to my post. Sounds like you have been through a lot with a little results from lipoic acid. I did have many blood tests as well and they considered Lyme disease for a while still inconclusive. Your pinpricks all the time must be impossible My problem is that my toes have a mind of their own and cause imbalance when I walk and pain after just a few minutes of standing or walking. I saw a video on YouTube concerning the difficulties of trying to find causes for peripheral neuropathy and therefore the idiopathic diagnosis. She said that there is no such thing as idiopathic. In Latin it means an idiot. She is in Boston and I am in Plymouth and I'm trying to get an appointment to see her. She developed a list of tests that doctors should use to try and rule out certain causes. This was 7 years ago and the list is being used today I believe. The doctor is Dr Oberlander. I will give you more information as I go back and find it and forward as I see her.
Thanks so much for sharing. I can wish you good luck and hope that the pinpricks are gone.

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@cax75 I, also, believe you mean Dr. Anne Oaklander who is a well-known authority on neuropathy who works from Mass General Hospital. Please tell us any info from past appts. that might help some of us, and also any new information from future appts. Would greatly appreciate it. Thanks.

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