Do I have Ehlers-Danlos?

Good morning,
I am full of questions lately.  Be patient with me.  After researching EDS online and watching an online hour long video of a EDS/Chiari conference, I am beginning to think I have EDS.  None of my NS (been to quite a few) have even mentioned it.  I'm said to say, one hadn't even heard of it.  (Maybe I pronounced it wrong, but I did get the EDS initials in there).  Anyway, those of you on here who have it, how were you diagnosed?  The following symptoms and tests is what makes me think I could be dealing with this along with my chiari.  I got these symptoms from the video.
Photophobia, headaches, migraines, dizziness, tachycardia, hypothyroidism, easy bruising, stretching of the skin, and the one that really threw me was the blepharclonus, which is the fluttering of eyelids when they are closed or slightly closed.  WOW...no one has been able to explain my eye fluttering and under the eye muscle fluttering.  One NS even thought I was making myself do that.  Just am interested in this because if I proceed with surgery, I think whoever does the surgery would need to know this ahead of time, from what I have read.  I also pass almost all of the hypermobility tests shown online.  Anyone with EDS and information would greatly be appreciated.
Happy Sunday!

[selmaS]

Hi...the eye fluttering is something I do when my DD wants to apply makeup on me...she keeps yelling to stay still...I tell her I have no control of it....lol....so I totally can relate.

I was DX'd by the NL that works with my chiari NS at TCI.....they do have a questionnaire, but there r some rheumatoid drs that specialize in EDS.
We also have a EDS group here on MedHelp
http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc.

When I first saw the hypermobility tests, I felt this is not me, I can not do that....but I can and do.....depending on where u r , u will want a geneticist and a good rheumatoid dr to evaluate u.

Also, ur chiari dr should be advised b4 u have surgery as those of us with EDS not only heal at a much slower rate, we also have a higher risk for rejection of the patches unless made from our own skin...and stitches and staples will tear the skin...so other methods of closure r necessary.

Hope this is helpful...ask more I am willing to offer as much help as I can : )

"selma"

[CB1122]

I recently met with a Neurologist at TCI (The Chiari Institute in NY). He asked if I had ever been told I had EDS or even was evaluated for it .... I had no idea what he was talking about. I am tall and pretty flexible, but had no idea that it was due to EDS. He said I have a mild form (very flexible, bruise easily, wounds heal longer, my wingspan is longer than my height, and there were more...)

Basically I think there are not a lot of doctors who know of EDS and even if they do might not check for it unless the patient seems concerned. I definitely think whoever is treating you for Chiari needs to know - the neuro I talked to said my EDS could be the reason my brain has a herniation.

Good luck!