I was diagnosed with SLE in 2004. It was confirmed by more than one rheumo, including the one I had to see in order to qualify for disability.
I have SLE.
Since then, I've moved cross country, and have been through quite a few rheumo's. I learned that I have to TELL these people why I am seeing them, and not let their sometimes less than analytical minds wander too far from that. I don't ask for rheumo's opinions anymore until we establish some ground rules, and they show me that they are willing to stick to those rules. I am not there for an opinion on whether I have Lupus or not. I am also not seeing them just so they can second guess a proper diagnosis made by a competent group of fellow rheumo's. Just because they don't know jack about autoimmune disorders, does not make it OK to "un-diagnose" me because they are ignorant about a subject that they are supposed to be an expert on.
I tell them I am seeing them so they can monitor my Lupus and keep me going on my already effective treatment plan/meds. If they cannot grasp that I am there to have an existing autoimmune disorder monitored and treated, I turn around and leave. I had one rheumo start his first conversation with me by asking me "what makes you think you have Lupus?". UH, because I do? Because I was diagnosed with it in 2004. Because I was approved for full disability because of it. Because my mother also has Lupus. Because I met and exceeded the diagnostic criteria...
That appointment did not go well for that rheumo. If I sound angry, and sound like I have very little good to say about most rheumo's, then so be it. There comes a point where we have to walk into that Dr.'s office with a clear cut goal-treating our autoimmune disorders. I refuse to allow any Dr. to throw my life into a confused shambles of second guesses as to what is wrong with me. I will not allow any Dr. to endanger my health by taking me off the meds that have worked so well for me in my seven years of living with Lupus. If I have to be an a-hole to achieve this, then once again, so be it.
They work for me. I walk into the office with the attitude that I'm running the show, and that they are there to do a job. This is what works for me.