[QUOTE=MAT52;114537

However I believe I need them to alter the disease activity scoring system for me, to include my nerves, blood vessels and jaw so that I can meet the criteria for further immunesuppressant medication. I think I do probably just have a very systemic type of RA which overlaps with other diseases, causing inflammation in the nerves. But it could be that I actually have inflammation in the joints and just because it's seronegative and there no visible presence of hot swollen joints my rheumatologist is now waiting to see if the RA is causing my jaw problems perhaps before offering me further treatment.[/QUOTE]

I can relate to this! I have sensory and autonomic small fiber neuropathy with a positive ANA, and "the antibody profile of a lupus patient" at 10 times the normal upper limit. Yet my rheumatologist won't diagnose me because I don't have the typical skin or joint manifestations of lupus. She says, "you don't want to have lupus," but naming it won't change my condition and I do want a diagnosis!