[Winter24/7]

I've been lurking in the forums for a few years absorbing all the great info that's shared here. First, I owe a special thank you to everyone for sharing your stories!! I too have been struggling and squirming to find answers and others like me. I'm still dealing with an unknown aspect as to exactly what I have, and I have had many tests. I was recently told I may have a form of HSAN but nothings been exactly pin-pointed since I do not have any sensory loss.

I wrote a fairly detailed (but short lol) description for my profile so there's probably no need in posting it here too... So if you want to know my details maybe go there?! I'm just thinking whats easiest.

I really look forward to getting to know you guys and possibly finding others with similar symptoms who can help me understand and plan for the future.

Thanks!!

[Rrae]

How wonderful of you to come out of Lurk-mode!
As you already know, NT is packed full of wonderful caring people. I'm sure you are aware of all the good information there is up in the 'Sticky' section of each forum.

Forgive me, but what does HSAN stand for? I read your profile page and see that you've been having quite a time of it. I'm so sorry. At least here, you know that you're not alone. I felt completely lost until I found Neurotalk. I live in a small community and nobody seemed to understand what I was going thru.

Anyway, I just wanted to give you a 'Formal' WELCOME
It's great to have you here!

Caring,
Rae

[Darlene]

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

[Winter24/7]

Originally Posted by Rrae

How wonderful of you to come out of Lurk-mode!
As you already know, NT is packed full of wonderful caring people. I'm sure you are aware of all the good information there is up in the 'Sticky' section of each forum.

Forgive me, but what does HSAN stand for? I read your profile page and see that you've been having quite a time of it. I'm so sorry. At least here, you know that you're not alone. I felt completely lost until I found Neurotalk. I live in a small community and nobody seemed to understand what I was going thru.

Anyway, I just wanted to give you a 'Formal' WELCOME
It's great to have you here!

Caring,
Rae

Thank you for the personal welcome!! It really makes me feel like a part of the family here. Thank you for taking the time to do that, it means a lot to me.

[Winter24/7]

Originally Posted by Rrae

Forgive me, but what does HSAN stand for? I read your profile page and see that you've been having quite a time of it. I'm so sorry. At least here, you know that you're not alone. I felt completely lost until I found Neurotalk. I live in a small community and nobody seemed to understand what I was going thru.

HSAN is Hereditary Sensory Autonomic Neuropathy. It's for the most part a sensation inhibitor disease and I've seen several people in the forum with Type 1, which is also known as Charcot-Marie Tooth syndrome (CMT).

There are a few different forms but all are connected to some kind of sensation loss with severe temperature sensitivity. I have severe temperature sensitivity but I do not have any sensory/sensation loss and my temperature sensitivity is not hereditary. I was told there has been some reports with more rapid onsets of HSAN, of severe hyperactive non-epileptic type seizures that get very aggressive, but I haven't had any I think were like that, yet.

If anyone wants to read further, there is a wikipedia page on HSAN - **

[Winter24/7]

Originally Posted by Darlene

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.

[mrsD]

Welcome to NeuroTalk:

Have you had DNA testing to confirm this?

[Winter24/7]

Originally Posted by mrsD

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.