hi desert, did you ever have your 1,25 vit d level checked? if so, what was it and what was your 25, d? if you have sarc the paper i read says that the 25, d is below 25 which mine is, and the 1,25 d is above 25 which mine is 58! i am hoping to get into johns hopkins in about 3 weeks. they out me on a waiting list. i agree i need a specialist. i will be seeing my primary on friday and will ask for an ace test. but from what i read - that can be normal in sarc. i didn't take any vit d today and lo and behold! i have not been thirsty!!!!!!!!!!!!!!!!!! yesterday i was crying it was so bad and today its a miracle. for some reason i don't think i can take vit d. so now i worry about my bones, but if you have sarc it says that taking d can actually cause osteop. go figure! and you have to stay out of the sun. when i am in the sun my chest gets tight, so for that, and other reasons like the d and the thirst, I am self-diagnosing. it seems to all fit. i hope its not this because the cure is steroids. i'll keep you posted. if you know anything else about sarc or how to treat it, do post!