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Idiopathic Neuropathy - Don't all neuropathies have a cause?
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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@jamessaxo My doctor tests my blood every year and everything's fine, I've been taking a vitamin B complex supplement for years.
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1 ReactionI did read on internet, that alcohol numbs the billions of villi lining our
20 ft long intestine so B12 is not absorbed. But u say u have plenty
because doc did blood test. That is a mystery. I am 83 and gave up all
alcohol 3 months ago.
Go for it.
James
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4 ReactionsAnyone with idiopathic neuropathy? Just saw this upcoming webinar from the Foundation for Peripheral Neuropathy and thought others might want to sign up for it also to learn more about possible causes.
Shedding light on idiopathic PN: Recent advances in understanding
Tuesday, May 05, 2026, 1:30 PM Central Daylight Time, 1 hour
Register: https://event.on24.com/wcc/r/5305746/EEE3CEF81692A3D029C29AA214565BF9
Idiopathic peripheral neuropathy is a type of neuropathy where no clear cause can be found. It affects up to 27% of adults with neuropathy.
In this webinar sponsored by Lilly, we will explore new research that is helping us better understand this condition and leading to new ways to prevent and treat it. We’ll explore possible causes that are often missed, including metabolic health and immune factors. We’ll also explain what “idiopathic” neuropathy means and why it can be hard to find answers. We’ll cover common patient questions and share tips for better communication with your healthcare provider. This presentation will end with a live Q&A.
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5 Reactions@johnbishop
Thanks for this info! Being one of the many, who are suffering with this without a “known” cause, I am very interested in attending.
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2 ReactionsSame here! In my case all possible tests also came negative in addition to no cause for the PN. But still my PCP thinks it’s IPN and has put me on Lyrica. I think Lyrica is causing other pains similar to arthritis.
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1 Reaction@mrmacabre how much b6 is in your b vitamin complex? Too much b6 can cause neuropathy. Doctor often do not even test b6
Are any of your autoimmune markers high?
Mine have been high for years. I was first diagnosed with several types of neuropathy but my Ana,crp, sed rate, complement C3 and C4 were all elevated. Mine was autoimmune neuropathy. Finally diagnosed with lupus sojourns Hashimotos mixed tissue disease.
Normally neuropathy does has a cause. All the research is for diabetic neuropathy which is frustrating because you can’t find very little information on autoimmune or idiopathic neuropathy.
I suggest you get a copy of your labs. My doctor said it was fine but I had a speckled Ana which is not fine.
@bb0753 I didn't start taking the vitamin B supplement until after my neuropathy became an issue.
@mrmacabre
Alcohol dulls the tips of our intestine villi. So no B12 is absorbed even though u take plenty.
Do look up " alcohol B12"
@sbelur Mine is caused from being exposed to harmful chemicals