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Old 11-26-2011, 07:37 PM #6
Winter24/7 Winter24/7 is offline
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Join Date: Nov 2011
Location: Lake Tahoe, CA
Posts: 11
10 yr Member
Winter24/7 Winter24/7 is offline
Junior Member
 
Join Date: Nov 2011
Location: Lake Tahoe, CA
Posts: 11
10 yr Member
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Quote:
Originally Posted by mrsD View Post
Welcome to NeuroTalk:

Have you had DNA testing to confirm this?
Hi! Thanks for your input mrsD!!!

I have not, and it's never been brought up but you have me thinking about it now.

I do a ton of research on my own, and despite what I've been recently told, I don't think I have HSAN. This is from chatting to a few online who either live with HSAN from birth or recently discovered it. This includes people with all listed forms and some with rarer ones not publicly known. Severe temperature sensitivity is only one component in a long list that they all seem to share and I don't. Before this I was told I might have a rare but severe form of male Hyperthyroidism but there are no known severe non-epileptic hyperactive seizures associated with it like there is on rare occasions with HSAN.

I've been told by several doctors to continue as I have wearing these snowsuits since they work so well year round. The trouble is not knowing what I have which effects what kinds of treatments to begin with. I have no choice but to stay in these suits for now or however long, I don't know but I hope there is an outcome soon because my social life has been severely effected.
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