A Guide to Your First Rheumatology Appointment
So you've found a rheumatologist. Congratulations! For many, it can take years, like it did for my husband. The many hours of online searching, talking to others with ankylosing spondylitis, and connecting with other patients on Facebook finally paid off. Then it came down to the big moment: what would the doctor say about his diagnosis?
Prepping for your first ankylosing spondylitis rheumatologist appointment
- Finding a helpful rheumatologist is key to beginning the journey of treatment. Preparing is key to having the best conversation.
- Bring any and all copies of imaging. And not the reports, but the actual X-rays, MRIs, etc. We made that mistake once. Drove over an hour to an appointment to find out we were supposed to bring a CD with the X-rays and not just the radiologist's report.
- Find someone to take notes. I was there for my husband, but any family member could have been there. He could focus on interacting with the doctor and not worrying about keeping so much new information in his head. I could write everything down and make sure all his questions were answered.
- Prepare questions before you go. I even found some online that people suggested asking. (Here's an example from WebMD.) This helped us so much in having a fruitful conversation.
- It's okay to be nervous. It's your life and your health. If you are anxious or nervous, mention that to the rheumatologist. Ask when you schedule the appointment how long the initial appointment will last. We found out the doctor normally took 45 minutes, including a full physical exam of pain and mobility. This was a huge confidence boost.
During the appointment
Seeing the doctor was a big moment in our lives. It felt a bit like seeing a fortune teller. What was Keegan's future going to be?
- Tell the doctor how you're feeling physically and emotionally. It's critical to tell a doctor if you're anxious. They usually want to make sure you're doing okay and you understand what's going on.
- Ask how you can contact the doctor with any follow up questions. For my husband, we have a patient portal with a login to send messages to his doctor. She typically responds in 3-5 days, so we're connected to her even if the next appointment is 3 months away.
- Clarify how to answer questions about your symptoms. Do you report your pain based on your best day, worst day, or an average? This will help the doctor know how to keep track of whether treatments are effective.
- Ask about treatment costs. We mentioned to our doctor being concerned about the cost of Humira. She took a look at our insurance and saw we may be eligible for cost savings via a Humira cost savings card. This dropped our out of pocket cost immensely.
- Confirm the diagnosis. May seem like a simple one, but it's a big deal. Just because someone is referred to a rheumatologist with possible AS doesn't mean they have AS. Ask the doctor what the status of the diagnosis is and what the next steps are.
- Plot out a timeline. Ask the doctor what to expect from treatments. They may want to give some time to see how your body reacts to a treatment. That's okay. Clarify when you should expect to see a difference, and if there isn't one, how to follow up with the doctor.
After the appointment
- Reread through notes and send any questions to the doctor. Sometimes things are missed. Sometimes questions come up later. That's okay.
- Check-in with close family and friends to determine if the doctor is the right fit. Yes, it takes a long time to get into a rheumatologist.
- To help family empathize, bring them along to your next appointments. I've gone to nearly all of my husband's appointments. (I only missed one last August just after giving birth.) Seeing him talk about his symptoms and pain helps me get an understanding of what's going on. Hearing the dialog between him and his rheumatologist paints a better mental picture of his condition.
Have you ever been made to feel lazy, even though you live with a chronic condition?