I had a really unpleasant experience Friday morning with an orthopedist. He asked for my history so I told him i had lupus and his immediate reaction was "who told you you had lupus?" "about 20 different doctors over about 18 years." Then he goes on to tell me he doesn't believe that diagnosis until he runs his own test or talks to my rheumatoloist. Then he wants to know if I had an internist, a cardiologist, etc. I say "no, I get tired of going to appointments and they're running redundant tests, so I just go to one doctor. I used to have all those specialists but I don't feel I need that many doctors." I guess in his mind, if i don't have about 10 doctors, I must not have lupus. Now look, I don't *want* to have lupus. I wish I didn't have lupus. I hope one day I don't have lupus. And now I'm sitting here having to defend this diagnosis to this jerk, when I didn't even go in there about lupus in the first place. I just want to know what this thing is on my friggin' arm. Is it a tumor? A mass? a Cyst? Why are we having this conversation???
But I can't let this go, so I convince him I have lupus by telling him the details of my most recent labs: postive ANA, double stranded DNA, high sed rate, nephritis. I tell him I've been on prednisone for over a year at 3 different occasions.OK, now he believes me. But now he has to scare the crap out of me by telling me how common it is for people who've taken prednisone to end up having hip necrosis (bone death in the hips). Gee thanks, that's really helpful. (How'd you like some face necrosis?) And so relevant to the conversation about whether or not i have cancer in my arm. Oh and if I ever have hip necrosis, I should come back and see him. Not no but hell no.
Now that we've sat through 2 excruciating opening acts, can we get on with the main attraction, the whole point of my being here? The test results, please. Well, it's a tumor, he says, delivered with the same dispassionate tone of voice you'd use to tell someone that the telephone bill just arrived.
Now he wants me to get this isotope test to determine whether it's benign (or not). I express concern- aren't they going to shoot radioactive dye into me. His response (and I quote) "so what?" So my grandmother died from an iodine test, that's so what. I have a history of kidney failure, and shooting poisonous crap into my veins is risky, that's so what.
Well the good news is, he is not qualified to work on tumors, so I never have to see or talk to him again. I have to go to an orthopedic oncologist. He referred me to one, but it occurred to me that anyone who's a friend of his might share his bedside manner, so I decided instead to save myself further insult to my existing injury, and possibly further injury as well. I suspect if they killed me or accidentally lopped off my arm they'd still send me a bill and say "so what?"
Lucky for us we have a friend in the area who is a really good doctor and a decent person, so we called him and got a referral to a different ortho oncologist. I'm not going to any more doctors without a referral from someone who knows them. And if they don't like it, "so what?"
In the future, I'd love to be able to take the "Who told you you have lupus" as a compliment to my appearance rather than an insult to my intelligence. I am glad don't look sick right now. But I don't like defending my diagnosis. Do doctors do this with other diseases? "Who told you you have cancer? Who says you have MS?" I don't know, maybe they do. But there's got to be a better way to present such a question.