I don't play the "waiting game" very well. My doctor's office had difficulties locating the correct group at DHMC for the appointment, so one afternoon I decided I had waited long enough and both located the group, had a phone consultation, and set my first appointment.
I spoke with a genetic counselor, Sheila. She is wonderful! She knows the syndrome well enough to both ask me many direct questions and effortlessly provide answers to mine. It already seems like I have found the "right" place. Sheila advised me to make the appointment a month out so we have time to gather medical records, mine as well as my sister's, and give the group some time to pour over these. She also understood that there would be more in my sister's records to support a diagnosis of EDS than in mine.
My sister had several dramatic medical incidents that required medical/surgical support whereas most of my symptoms are not something I would consider taking to a doctor. Until a few weeks ago I wouldn't have considered my flexibility a problem; double-jointed joints runs in the family and is just a way of life. My skin being loose; never thought to check the skin on other people and it is not loose all over, mostly on my hands and neck. My joints snapping and popping and the discomfort/dislocations that result mostly happen in the winter and in association with major storm systems; I always thought it resulted from old joint injuries and the atmospheric pressure changes - I even enjoy being a human weather station! I had been working on an excuse for the discomfort in my hands, feet, hamstrings, calfs, biceps and triceps each winter - but am now finding it is normal because of the extra support these muscles have to provide the joints in my extremities when arctic cold weather arrives.
To top off the initial phone consultation, my doctor's office found the correct place the same day I did. Sheila noticed an appointment had been made for me in Lebanon, whereas I made my appointment in Manchester (shorter drive and can be done after work). She called me immediately. I know I am in good hands.