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Wed May 6, 2015, 09:05 PM

idiosyncratic axonal neuropathy [View all]

Translation: Your nervous system is degenerating from the inside and we don't know why.

Damage is moving its way inward from my hands and feet. I've lost some ability on the guitar but I'm learning work-around so I can still play.

No diabetes, no auto immune disorders.

I have constant pain.

One neurologists' s prognosis was that I'd be paralyzed in 20 years. That was over a year ago. Then he told me to find a better neurologist.

I am done spending time and money on doctors. I've been working with a nutritionist. An anti-inflammatory diet has slowed the pace of the accumulating nerve damage somewhat.

I've been working with a massage therapist who has shown me some posture and positioning things that can help reduce extreme pain to a livable level sometimes.

Anyone have any experience with anything like this?

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rbnyc May 2015 OP
elleng May 2015 #1
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SheilaT May 2015 #6
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arikara May 2015 #14
moonbeam23 May 2015 #9
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magical thyme May 2015 #12
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japple May 2015 #13
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PumpkinAle May 2015 #17
Maraya1969 May 2015 #18
rbnyc May 2015 #19
Maraya1969 May 2015 #21