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!!
"Life is not about waiting for the storm to pass; it's about learning to dance in the rain."
Fibromyalgia, Rheumatoid Arthritis, Type 1 Diabetes, Grave's Disease, GAD, migraines, panic attacks, chronic hangnails (just seeing if you're paying attention!) : )