I hope you can find a new doc, or maybe clarify things with your new one so that you have a better relationship. It will make all the difference in the world in your treatment.
I just wanted to say I have probably had whatever this disease is for years (I call it my "mystery disease") but my rheumatologist says it's just a label and she's treating my symptoms as if I had lupus. She said it could also be Sjogren's, or both, but that the name doesn't matter, she wants me to feel well and heal, and to prevent further damage to my body. That has helped me feel like I'm not so much in limbo, which I did like you.
Wishing you the best ... it's a long process getting the right help, but you are not alone.
Dx: Fibromyalgia, Endometriosis, Kidney stones, APS, UCTD, Chronic/Acute Organizing Pneumonitis, Hashimoto's hypothyroidism, depression, anxiety, osteopenia
Meds: synthroid, cellcept (generic), prednisone, plaquenil (generic), zoloft, xanax, actonel, fish oil, vitamin D, calcium, fiber, baby aspirin