So, I was told by a geneticist, a few months ago, that I did not have EDS. She told me I had instability in my joints, and then proceeded to ask me why I wanted the dx since there was no treatment for EDS.
Since then, my mother has been dx-ed with type III EDS. The head rheumy at Vanderbilt took one look at her and dx-ed her immediately.
We are in the process of trying to get my 18 dd a firm dx as well (which is why I tried to get my diagnosis- to make a positive family history for her), and we are getting very frustrated with caregivers who will not think outside of the box.
I am sure that I DO have EDS, but w/out validation I feel somewhat like a lurker, lol!
I was just told by my husband's boss, who is a hand specialist Physical Therapist, that I have a TFCC tear in my right hand. Last year, an ortho surgeon told me I have a SNAP lesion in my left shoulder. I have subluxing shoulders, wrists, thumbs, hips and feet, but I am low on the Beighton scale. Of course, it doesn't help that I've had surgery on my elbow, and my wrists hurt too bad to move in ANY direction. I can put my hands flat on the floor with no problem at all, but the geneticist didn't even ask me to do that. All she did was take a short history, and then feel my skin and try to bend back my bad wrist. She also neglected to actually LISTEN to my history b/c when I got back the report, she had listed hernias as a negative, even though I gave her the report from my endoscopy with a hiatal hernia mentioned.
Did I mention that I'm frustrated?
For further introduction, I have 6 children, one of whom has a severe neuro condition. I was accepted into medical last year, but have since decided that I could do more good for my children by staying home with them- part of the reason I had wanted to go was to try to get them (and myself) proper medical care by having the right connections and the "know-how".
I love that so many of you have taken upon yourselves to read and study the info that's available, since it appears that many medical professionals fail to do this part of their job descriptions.
Look forward to learning from you all!