I had my first appointment at Stanmore on Monday. I saw Dr Cohen, and accompanying person (missed who she was
). She was very thorough, I think we covered most symptoms although, as usual, I remembered a couple fo things after I left. She scored me higher than everyone else, said my elbows were hypermobile when i thought they weren't, but I must admit I can't actually see them that well so will take her word for it. Come to think of it, I have always said they weren't when asked so no one else had actually looked at them! The only thing I can't do now is get my hands flat on the floor when bending forward, and I am convinced that is only because my stomach gets in the way!
Sh also sent me for blood tests, including for vitamin D levels, and for X-rays of my hands, lower back and pelvis. I saw her again after the X-rays and she is happy with what she saw, so is recommending me to the rehab team for assessment for the in-patient stay. I know it will take a while, but I am prepared to wait, just happy to know that things are moving in the right direction.
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!