Thank you, Susan, for the great idea! I didn’t even think about this: what to expect from a doctor’s appointment/rheumatology appointment. It’s a great question because I had no idea what to expect when I went.
Expect to wait awhile to get an appointment. I don’t know if it’s always this way and maybe insurance type makes a difference. I have Kaiser, which overall is fairly good. But often times you have to wait months to see a specialist for most things. For example, when I was going to see a hip surgeon I waited 4 months. (When I was given the option for hip replacement I was told the wait list was 18 months.)
My route for seeing rheumatology went like this:
I saw my PCP for an issue with foot pain. He noticed my nails had pitting and said he wanted to refer me. I made an appointment (I think it was about a 3 month wait).
Next, my PCP ordered a bunch of tests. There was a HUGE list of blood work I had to get done first. A lot of it was stuff I’d never heard of. If you have Rheumatoid Arthritis, lucky you! There is actually a blood test that tells you if you have that!
Finally! The day has arrived. I suggest you arrive with a family history so you can answer some questions, especially if any kind of autoimmune/arthritis runs in your family. Have a list of questions ready. It’s easy to get rattled and forget. If you can, maybe keep a log for a little bit of what your pain feels like? Is it stabbing? Throbbing? Aching? Does it change throughout the day? Does weather effect it? What helps? Big one: Does the pain or stiffness, etc effect your daily life? Like work, being a parent, cleaning your house, driving, walking, etc?
The doctor asked me a bunch of questions about my history, my history with pain and exercise and injuries. He then did what I now know was “Joint Count Exam: Joint count tests are a big part of the Disease Activity Score (DAS), which is a measure of disease activity, and the American College of Rheumatology’s criteria for hitting remission.” Basically he poked my joints and asked me if it hurt.
- Shoulders (2)
- Elbows (2)
- Wrists (2)
- Knees (2)
- Two joints in each finger and thumb (knuckle and second finger joint) (10 per hand or 20 total)
What I found frustrating after the fact when I learned more about this, was they don’t count feet or ankles, which is notoriously where inflammatory arthritis happens. I have no idea why!!
Alright, next up he said he thought I had PsA and ordered some more tests:
- X-ray of my spine
- MRI of my SI joint (this is where they often confirm PsA)
After the MRI and X-Ray results came back, I had a video appointment with the rheumatologist who confirmed I had PsA and Axial spondyloarthritis. We talked about options and I waited about 6 months before we decided to start medication. Once that decision was made, I had to get a TB test and a chest X-Ray to rule out asymptomatic TB and I’ll write more about the medication options later.
Hope this helps! I’d love to hear other people’s experiences.