What you are going through is familiar to most of us who have lupus or other autoimmune diseases. I know just how frustrated you must be. Hippi has given you some good resources. Lupus is so hard to diagnose because there isn't a blood test that will confirm it. It took three rheumys for me to finally get a diagnosis. I agree with Des that you should pick up a copy of your chart and make an appointment with another rheumatologist. It may take a few months to get an appointment with a new rheumy, but in the meantime, keep a journal of all of your symptoms whether or not you think they might be related to lupus. You may have had other symptoms in the past that you don't have now. Write it all down. The more information you can give your doctor, the easier their job will be. And take a list of every question you have and make sure your doctor is caring enough to listen to your concerns and answer your questions.
We are here to help you in any way that we can. There are some compassionate, knowledgeable people here and we all know what it's like to be in diagnosis limbo. It's almost the worst part of the disease because until you put a name to whatever you have, you can't start treating your disease.
I'm glad you're here and hope you'll feel free to vent and ask any questions that you have.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.
cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin