Welcome to the site. My name is Kathy and I have SLE, Lupus and several other Auto-Immune disorders. I read through your post and I have to wonder if you have been tested for Pernicious Anemia due to the sore and inflamed tongue and mouth and muscle weakness. A lot of the symptoms that you describe can be related to Pernicious Anemia. You could also have Lupus along with it. I would definitely go in to see a different Rheumatologist, but I would also see the Primary Care doctor and ask him/her to run a test to see if you are B12 deficient. I would also ask them to rerun the tests for Lupus again as well. I hope that you keep posting and let us know what is happening with you.
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.