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Old 04-30-2017, 11:38 AM
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janieg janieg is offline
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Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
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Quote:
Originally Posted by madmax80 View Post
Hi,

I'm supposed to have genetic tests in 10 days for sodium channel mutation.

I'm looking for your help in trying to find the cause for this thing, what tests should i ask my doctors to conduct, what is the best center in the world to try and diagnose and treat this thing. any help is appreciated.
Hi madmax,

Sorry you find yourself here, but you have a lot of company.

Many of us are idiopathic and have no clue why we have neuropathy despite extensive work-ups. I'm currently exploring any possible genetic cause having taken an whole exome test. I'm on my own doing this, though. I have to sift through my results.

Are you here in the U.S.? The one thing I've not done is had a full-blown Lyme Disease work-up. At least one person here discovered the source of her problems doing that. I have a local Lyme Literate Doctor (LLD), but he doesn't take insurance, and it's $800 for the first appointment. That doesn't include any testing.

Janie
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