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Old 05-19-2017, 04:58 PM
Goosiegoo Goosiegoo is offline
Junior Member
 
Join Date: Sep 2015
Posts: 23
8 yr Member
Goosiegoo Goosiegoo is offline
Junior Member
 
Join Date: Sep 2015
Posts: 23
8 yr Member
Confused Not autonomic per neuro

Quote:
Originally Posted by Healthgirl View Post
No this isn't normal. This never happened in my life. I'd go out and get a tan, not turn purple with circles. No doctor has told me that it is normal. It is from autonomic nervous system damage that causes vasospasm and body temp to cool the skin can not be regulated.
Yes my thighs do hurt. Feel like I do 200 squats a day, from nothing. Also skin burning started on my thighs. This reaction to the sun has calmed a bit. Last summer was not as bad as 2015 when it started for me and my kids. They have no REAL answers for anything. The closest they can come for us is that we have Ehlers Danlos syndrome and some thing triggered us in to autoimmunity on top of it. I think there is more figuring to be done. It's all just too freakish.
My docs have tested me for autonomic damage through sweat test and QSART
And they sai I don't have it. Crazy freakish!! Do you have trouble wearing pants?
Are they treating you with ivig?
My sister has MS so I wouldn't be surprised if mine was autoimmune.
Have you had genetic tests for scn9a mutations?
I'm getting my results back soon.
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