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Old 10-15-2007, 10:45 PM
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LizaJane LizaJane is offline
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
LizaJane LizaJane is offline
Member
LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
Default one more thing

Other thing: I've thought about mitochondrial myopathies and I've been thinking, without real clear understanding, that for many of us with "idiopathic" neuropathy, our body behaves as if we had geneetic mitochondrial myopathy. Hear me out: Most idiopathic cases are the length-dependent neuropathies. Something is knocking out the long axons, NOT the cell bodies.
Well, the long axons are highly dependent on mitochondrial energy, and it's not inconceivable that toxins have poisoned our mitochondria. I think the way heavy metals poison nerves is through the mitochondria. There may be many things that poison our nerves this way.

Anyway, I asked my doctor to measure my carnitine, and it's very low. I take carnitine supplements and CoQ10. I'm not sure exactly what they are doing, but even though I've had lots of health problems over the years, my neuropathy is still much much better than when it hit me in 1999. I consistently have an ankle reflex now; that took 7 years to get back, but I got it.

I have diffuse small fiber symptoms now in a way unlike what I had originally---I'm getting weird sensations in my fingers and skin, even face and scalp. This feels like something different, and my neuro thinks it is. I still have my ankle jerk, despite this.

So, what I'm rambling to is this: maybe many of us with idiopathic have depressed mitochondrial function, whether we inherited it or not.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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