Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thank you Darlene for your wonderful welcome and for visiting my profile to read my story. I wasn't sure if it would be a pain to ask people to go there to read about me or if it was best to repost it here as well. I went with the easiest and hope that was the right discussion. I sure hope I didn't inconvenience anyone.

Anyway thank you so much for the welcome, it relieves a lot of stress and intimidation of joining a new community like this.

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.