Thank you for reaching out to me. I am tech challenged and not sure how to navigate the website. I created a new community. Probably should not have done that.
Anyway, I am 61 years old and I believe that I have had EDS all my life. I was born with left hip not developed. Was in a harness or cast. Learned to walk in it. I have swan fingers, pinky and knees hyperextend. My entire life, I have had chronic headaches, back, neck pain, anxiety, extreme fatigue, face pain, flat feet, etc. Gastro issues, burping, heartburn.
March 2021: gallbladder removed (chronic gallbladder disease).
May 2021: I had tingling in my neck. Had MRI of cervical neck. Diagnosed with significant degenerative disc disease, severe osteoarthritis, bone spurs, facet joint hypertrophy, mild subluxations from C2 through T2. I have not been formerly diagnosed with EDS but I fit much of the criteria and then some. I return to neurologist next week and then have an appointment with Rheumatologist (new doctor). My OB-GYN, said to discuss everything with the new Rheumatologist doctor-concerns with EDS, symptoms, spine surgery (given my severe osteoporosis). Nerve roots are compressed from C2 through C7 (bilateral). I am extremely frightened given that I probably will need surgery; however, I don't think that I am a candidate given my weak bones.
At age 43, pre-menopause, diagnosed with severe osteoporosis. After asking osteoporosis doctor why I had this disease so severe, she asked if I was flexible. I said yes. She mentioned something about collagen defect. That was in 2012. Also, in 2012 I had left bunion surgery that did not heal properly. Surgeon said it was due to osteoporosis. Surgeon also said that my bone quality was a 3 out of 10. That was before I even went through menopause.
Paternal History: Uncle born with club foot. Had episodes where he would just faint and fall. This was in the 1970s. 2 cousins had jaw deterioration and had all teeth removed as well as knees popping out. 2 other cousins, faint and fall.
Maternal side: I don't know if this is related. My Mom's sister at age 23 (1956) was out dancing, came home, vomiting. The next day she was paralyzed from neck down.
I was wondering if anyone knew of any doctors on Long Island, New York who specialize in EDS and if any doctors on Long Island test for the disorder? I would appreciate any information that you could share. Thanks.