Hi Purple Butterfly,
Welcome back! You are not alone, not at all. I know that the 45 minute drive to the good rheumo is not very convenient, and your reasoning about keeping the rheumo in the proper network is logical, but good rheumo's are few and far between, and I would consider sticking with the one you like despite the distance. You know, I have been living with SLE since 2004. I got a very definite diagnosis, and was as clear cut a case of SLE as my original rheumo had ever seen. When I went on disability, two more rheumo's confirmed my diagnosis.
I know I have Lupus, because I know myself and my symptoms. I went to a new rheumo about two years ago, and he tried to pull the "undiagnose you" trick on me. I told him I was not there for a damn diagnosis, I already have that. I am there for TREATMENT! He continued to be a condascending idiot, and I made a big scene and stormed out of the office. My mother has SLE, I have joint pain, terrible sun sensitivity, fatigue beyond belief, consistently positive ANA, and just about all of the other more common SLE symptoms including bad brain fog. Since the initial diagnosis I have had no less than 4 rheumo's confirm the diagnosis and now I have some rheumo who knows absolutely nothing about me tell me I don't have Lupus? He even recieved ALL of my past records and still insisted I didn't have Lupus.
Now, I would give anything not to have this crappy disease, but the fact is, I do indeed have it, and I don't need some idiot throwing a wrench into my treatment plan and screwing up my life and my health. You don't need that either. From what you said, it sounds like you met the diagnostic criteria for SLE and was in fact diagnosed by two separate rheumo's with SLE. If you do not have Lupus, then why would you start feeling better on Plaquenil? Plaq is only prescribed for two reasons-to manage SLE, and to prevent/treat Malaria. And since I'm assuming you haven't been camping out in the jungles of Panama lately, we can rule out Malaria.
This sort of thing makes me angry because it's happened to me, and to many other's here as well. These incompetent health care "professionals" don't seem to understand what this sort of thing does to a persons head. To accept a bad diagnosis and learn to live with it only to have some idiot flippantly tell you it's all been for nothing is a good way to push a person into depression, not to mention into a stress induced flare from the disease they claim you do not have. Oh the irony of that!
As far as also having Sjogrens, if that is indeed confirmed, I am sorry. However, having multiple autoimmune disorders is fairly common, and I can tell you from experience that dealing with two is not that much different from dealing with one. I have on top of SLE, MS. I figured when I was diagnosed with MS that it was game over. At that point SLE had beaten me up badly, and now, I have an even more serious autoimmune disorder as well? I was in a very bad state of mind from this new bit of bad news. But that was almost 1 1/2 years ago, and to be honest, I am doing fine with both. Life with two AI disorders really is not much more difficult than life with 1, in my opinion. And to give you even more hope, my mother has both SLE and Sjogrens, and she's still active and happy at the age of 73. She was diagnosed with both nearly 20 years ago.
I know you are overwhelmed, but trust me when I say you can cope with this. It will take time, effort, and understanding from those around you, but things will calm down and get better. As far as that other rheumo, don't let some know nothing put you into a tailspin with an "un-diagnosis" that goes against all of your previous test results, against all of your previous rheumo's opinions, and your own knowledge of your body. Hang in there, and vent whenever you need.
PS- Don't ever worry about making a long post, sometimes, we just have alot to say!