Thread: Cmt
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Old 03-05-2019, 10:47 PM
Angle Angle is offline
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Join Date: Mar 2019
Location: Seattle
Posts: 1
5 yr Member
Angle Angle is offline
New Member
 
Join Date: Mar 2019
Location: Seattle
Posts: 1
5 yr Member
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Quote:
Originally Posted by JoannaP79 View Post
Hi Elaine, apologies for the long delay. I've been off Neurotalk all Christmas and New Year.
I don't know how to pursue testing. It's not readily offered here on the NHS. Was this covered by your insurance? I'm not sure where to begin as I understand the testing has numerous limitations. I can't afford to pay out significant amounts.
I mentioned ehlers danlos to my rheumy but she advised against pursuing it. I do value my new rheumys view point. I understand that testing for this is confusing and limited. I don't understand if and how genetically inherited disorders like CMT and EDS relate to autoimmunity. I have autoimmune problems outside of the Sfn.
Contact nearest MDA clinic .there are at least 30 variations. MDA did mine for free
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