Welcome to this forum Still Jake's Mom. I think I remember you from the Lupus forum. I have Lupus with secondary Sjogren's. If Sjogren's Syndrome is the only autoimmune disease you have it is called Primary.
I have an interesting story about my swollen tongue. I went to an oral pathologist because my tongue was swollen and I had a few ulcers in my mouth and one on my tongue. My tongue was so swollen that it also had ridges along the front. She told me that she herself had this very problem and she called it scalloped tongue. It comes from being so stressed that you push your tongue up against your teeth. The tongue is a very strong muscle so it easily presses hard making it look swollen. She said it happened to her in college. I was stressed about my lupus and the pain (of course). She told me the "secret" to relieve this: open your teeth while keeping your lips closed. Every time you feel your tongue against your teeth repeat to yourself, "open teeth. open teeth." It works! She also injected my tongue ulcer with prednisone. It cured the ulcer, but the injection hurt like a son of a dog.
I'm very sorry you still don't have a diagnosis, but drop by anytime. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry