I'm sorry to hear of your problems, nikkid.
I don't have any words of wisdom, but I can understand the fear you're feeling, as I've been dealing with an undiagnosed issue for over a year and a half. (Swollen lymph nodes, burning pains, swollen-feeling legs.)
Its frightening when you know that something is going on, but you're treated like some hypochondriac...just wanted to let you know I feel your pain!!