What to Expect

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.

First Up

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!

Rheumatology Appointment

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)

Follow-Up

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.