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Old 08-05-2017, 08:02 AM #3
Healthgirl Healthgirl is offline
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Join Date: Dec 2014
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10 yr Member
Healthgirl Healthgirl is offline
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Join Date: Dec 2014
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Quote:
Originally Posted by janieg View Post
So sorry to hear about the setback. The down cycles are just so disheartening.

Has anyone done genetic testing on you and your girls to look for variants?


We had genome sequencing done by Ambry genetics and they couldn't find anything, but they speculate heritable connective tissue disorder. The neurologist at Columbia says we have hEDS for certain with autoimmunity on top of it. The rheumatologist however says that without elevated ESR or CRP, even with the high ANA and anti smooth muscle antibodies, she can't say for sure that autoimmunity is part of it, or that it is damaging that is already done. It is so frustrating. I am sure that some kind of toxic exposure (or at least something toxic to our predisposition) got to us.
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