It's been a 6 year battle, I'm in constant pain now, I can't go out in the sun at all (even when overcast it's bad), I have a positive ANA of 1:640, I get nasal and mouth ulcers, I'm exhausted, I get protein and blood in my urine for no reason, the skin around my nails swells and cracks during flares, I get rib pain on one side, constantly and grating sometimes when I breathe in and dry eyes, and I have a clear red/purple rash on my nose and cheeks which is now becoming awful and bumpy. But when i finally saw a rheumy 2 months ago he just refused to listen, he asked me what my "main symptom" was (joint pain I guess) and then ignored the rest.
All my other blood tests are fine, and he says that since the ANA "can be positive in healthy people" he's going to ignore it and it "definitely isn't lupus" it's probably "just rheumatic" My facial rash is awful and embarrassing (I've been advised on the skin forum to try and see a dermatologist with the hope of getting a biopsy) and the pain is constant and debilitating. I'll be seeing him again next month, what can I say to make him actually listen to me? Earlier this month I got so dizzy and weak I fell down some concrete stairs and injured both ankles - ending up in a wheelchair. This can't go on, I have a toddler to take care of. I feel helpless. Oh and I also lost a child to prematurity three years ago. What does it take to make them listen?