So yesterday was my check up that I have every three months. Like I said in the last post, there are no rheumatologists in my town so I have to travel about an hour and a half to the nearest rheumy.
My problem is – I don’t know if I need to find another doctor (or in this case office). Don’t get me wrong. My current rheumy is great. But I’ve had issues in the past and this visit just reinforced my doubts.
When I first began to get ill. I was recommended by my then Primary Care doctor that since she didn’t know why my ANA counts were high that I needed to see a rheumatologist to rule out Rheumatoid Arthritis. And as 25 year old, the prospect of being told I had RA scared the bejeusus out of me. I didn’t go back to that doctor and I refused to make an appointment with a rheumy. Eventually the pain got so bad that I had to quit my job and move back in with my parents – it was then I had a wake up call and made an appointment.
My first rheumy was recommended by a friend and was nice, if a little aloof. On my second visit she sent me to the ER and had me admitted for a blood clot in my leg. I was impressed that she found it. I was subsequently diagnosed with APS. But there were certain things that didn’t fit, my anti-DNA markers were high (along with other blood tests that weren’t common with APS), I had severe joint pain, and high protein in my urine. After doing my own research I began to suspect that Lupus could be my primary diagnosis with secondary APS. But my rheumy kept telling me no. It wasn’t that.
Cut ahead 8 months or so and that doctor retired. I was passed off to another rheumy in the same office and after my first visit with her she declared that I DID have Lupus and she had no idea why the other (original) rheumy would say that I didn’t.
(I know that the diagnosis of Lupus is kind of subjective since there is no individual test that could tell the doctor yes or no but if it was that obvious to another doctor and to me – why would my first rheumy be so adamant about my diagnosis NOT being Lupus. Is there a stigma attached to diagnosing someone with Lupus? Is it the unpopular thing to do? Or is it just some weird backlash to the new Lupus awareness…if you think it could be Lupus then it probably isn’t?)