Went to the rheum at 7am because they had a client who they though might not show up for a 7am appointment. I got 5 hours of sleep because Paul's in a working whirlwind, getting inspired and worked til just past midnight. I got in! So, he asked me tons of questions about my family history, and pains from since I was a child, I always ready to talk was willing to oblige. Physical exam.
I can clearly see that he sees this from a rheums perspective. Does that mean I need a second rheum's opinion on the diagnosis? I will wait for my second appt to decide. He says he is comfortable with the AS diagnosis, but ran a battery of more blood tests and xrays, and he wants to see my dexascan results, then we have another appointment to go over it all on July 7th. He said that they've been barking up the wrong tree with the infection since if I'd had an infection all this time I'd be dead, and the only way I could have an infection is if I was a drug user and inserting needles in my SI joint. It was kind of funny. He also found it amusing that I was on crutches, as Paul said when I got home, he sees lots of people in pain and those people with arthritic pain don't jump into crutches when they have a flare up. I explained to him how I tried for two weeks to get off the dang crutches with too much pain for success, but I still felt kind of stupid. The doctor was nice and took lots of time with me, about 50 minutes, so don't get the idea that he was mean or unempathetic. He said my images point toward AS and that 90% of the people with the HBL-27 genome come down with one of 5 arthritis type disease, AS being one of them. He said it's the most predictive genome in the rheum world. And 95% of those with AS have the gene. In comparison, only 50% of people with RA have the RA gene. He said each arthritis type disease had its own specific treatment (ie drug) that doesn't work on others, so he wants to get the diagnosis dead on before treatment, so we meet in 12 days and go over the other results and then come up with a possible treatment plan. I do feel there's a chance of overdiagnosis on this. I am naturally cynical/critical so it's hard for me to trust any doctor, and thus separate appropriate and inappropriate levels of skepticism. I'll see how the next appointment goes before deciding for/against a second rheum's opinion. So happy to get into a rheum within 8 days of knowing I wanted an appt, not so happy to still be in the AS column, but I am calm about it. I am grateful for the early diagnosis if the diagnosis ends up etched in stone. Walked in afternoon mostly, just around house. Felt tired and tendons around ankles ached but SI did fine, pain 0-1 at night!
| 