Confused Ans Failing Vs Eds Vs Autoimmune Vs Combo

[rubytuesday]

I'm confused. Two specialists had diagnosed me with EDS III. Cardiac specialist in dysautonomia explained to me that EDS could definitely be contributing factor to the blood/fluid retention in legs + feet since EDS not only weakens muslcle structures but veins as well. Kidney/endocrine function is normal. No pheocytomas (sp?).

Genetecist today tells me probably is EDS III but cannot say definitively due to my age/racked body with joint stiffness (altho I could do the hand things, stretchy velvety skin, veins visible in skin, skin very white in large places)--it was that the jaw subluxations and finger subluxations and knee subluxation were not enough. He said he couldn't put definitive on it without more joints dislocating and subluxating but he was almost certain I have it. Advised me to have DS, g-kids, sibblings and their g-kids on alert for a check while they're young. I asked him about the pooling in legs (he knows my cardiac specialist) and he tells me that it might just be from the autonomic nervous system failing (which was one of the things the cardiac specialist told me). He also felt there was strong sense of something autoimmune (yet test after test after test to date have been negative). He never examined my scars (that his counselor said would and he had me bend over to touch my toes--which scared me to death--first I told them my pain was about an 8 by the time he got into the room from the glutteal muscles/tendon being ripped off my hip bone, and because I have orthostatic hypotension and bending at the waist can make the BP drop and cardiac specialist told me I would have fewer warnings of faint. I did it, but rose slowly and was feeling a bit dizzy and hadn't even got up when he told me then to turn to the side).

I have 2 different hemeoncologist appointments upcoming for multicomplex immune deficiencies and bleeding disorder. I don't know if they'll explore that or if I'm still left hanging.

Thanks for letting me vent.