No I haven't been checked for it. I've never even heard of it. Thanks. I will definitely ask about this. Is there a special doctor who does genetic testing. My neurologist doesn't seem interested in that... just likes to pin everything on random connective tissue autoimmunity, but with out a cause, there is no treatment.

Hi HG,

There are a lot of sites on this disorder and I just took a quick look.....apparently any sort of doc can send in samples for genetic testing. I think the best thing for you to do is find an EDS foundation/organization that can refer you to an appropriate physician.....especially if your neurologist seems hesitant to pursue this.

You can read up on it in the meantime. Just don't get scared, for there are about 10 types of this disorder and some are serious.....others, as I sad, can be very mild ....so mild they defy detection until tests are performed. Google and learn!

By the way, I'm neurologist shopping now....I feel like I'm dating again... have an appointment at 1pm today. Two more slated. Let's hope this one's Dr. Right! (I'm still trying to figure out why I'm so sick too).

My best to you and your kids....

Sylvie