Hi everyone, and where/is it ok here? can I show people my MRI slides?

General
1

Hi everyone,

Thanks for adding me to the group. I am from New Zealand, where there are no EDS and Chiari experts. I have EDS type 3 with vascular tendencies. Nobody except my GP and my geneticist will believe me because well, they just don't believe in either.

I managed to get an MRI done on my head the other day, thanks to a neurologist who I demanded it from (but who still sent a letter to my GP saying he doesn't believe I have EDS and that I am 'grossly exaggerating my symptoms, if I have any' grrrrrrr.

I'm part of the FB groups, but I stumbled across this one last night trying to find slides to compare my head with. Am wondering if this is a place where one can get knowledgeable (obviously not professional but I don't think I'll ever get that privilege) thoughts on it.

Oh yes- I'm 31, I'm a mum, I work as a literacy tutor part time because I can't work full time. My dysautonomic symptoms are really bad, and have wrecked my everyday life. Now there is the constant neck and head pain, loss of vision etc... it blardy sucks doesn't it!!

Thank you

Rach

2

Hi Rachael

Welcome to our site.

The best thing to do is post your MRI's on your page under photos if you'd like. Then, anyone can look at your pics, and you can send private messages back and forth to anyone you add as a friend.

Please don't post them here in the discussions because it's not considered appropriate to do so under our rules.

We do welcome hearing your story and supporting you in any way we can.

Thanks,

Geoff

3

Thank you gag - yes, I wanted to find out the rules and how you guys work as a forum without doing something inappropriate, so that's totally fine :)

I will enjoy being part of a community of understanding and like people, and am happy to support as well as be supported.

Regards,

Rach

4

Thanks Rachel,

We are glad you joined us. This Forum is different than FB Groups, not that they are bad. I belong to many myself.

This is just a little more organized. All the Moderators are incredible and Chiarians also and the Members are amazing. You

will always find support and information here and most importantly understanding. We also have Medical professionals as

Members. I think you will be pleasantly surprised. Please ask us anything. I left a message on your MRI pics.

Tracy Z.