A Doctor’s Visit With More Questions Than Answers
When I was first diagnosed with ankylosing spondylitis, every doctor’s visit felt like walking into the middle of a storm with unfamiliar terms and phrases flying by me at hurricane-force wind speed. I’d leave disheveled, only latching onto bits of information that I understood or that resonated with me for one reason or another.
I did my best to take notes in the doctor’s office and then frantically research what I had heard once back home. At that point, I was just getting to know AS and didn’t always know if what I was feeling was a symptom or something else. I knew my rheumatologist was my best resource, but it took a while to understand what issues I should bring up and what questions I should ask.
Now I have a far better handle on the terminology, the nature of the disease, and how to handle my doctor’s visits. But that doesn’t mean I always feel in control. Sometimes I end up leaving with more questions than answers, even now.
Questions for the resident
Currently, I receive treatment at a rheumatology clinic within a university medical center in New Mexico. There are several pros and cons to being seen at a teaching institution. One con is that the clinic operates with a rotating cast of residents and physicians, so there’s hardly a visit when I get to see the same doctor twice.
My most recent visit was no different. Upon arrival, I spent much of my time with a new-to-me resident as he sent a slew of questions my way and jotted down notes as I responded. I raised several concerns with him, and he nodded his head repeatedly but only responded, occasionally, with more questions. I described the new pains and new symptoms I’ve been experiencing and he continued to take notes.
Finally, I asked if my new collar and breastbone pain seems like a symptom of AS. His response: honestly, I’m not that familiar with ankylosing spondylitis. Now I understand that residents rotate throughout the hospital and clinics and are exposed to a myriad of disease states, so I didn’t blame him. But the "I’m not familiar with your illness" response is still discouraging to hear as a patient.
Brief visit with the attending
The resident took his leave to go discuss his notes with the attending rheumatologist. After a good fifteen minutes, he and the attending doctor returned to discuss potential treatment changes and next steps.
Then, all of a sudden, I felt like I was caught up in a whirlwind of a storm again, reminded of those earlier visits just after I was diagnosed. The rheumatologist started speaking a mile a minute about my GI issues, the new breastbone pain, and the relatively new appearance of psoriasis spots. I managed to slip in a few words about my family history of Crohn’s and ulcerative colitis, only to be told that Crohn’s disease, ankylosing spondylitis, and psoriatic arthritis all have overlapping symptoms and it’s hard to know which diagnosis is correct.
In that moment, it sounded like she was throwing my AS diagnosis into question, or considering a second diagnosis. She confirmed the irritated spots of skin are indeed psoriasis, but did not advise any type of treatment for it, other than what I’m already on.
She also sounded concerned about my GI symptoms and referred me to a GI doctor. She seemed to confirm, though I can’t be certain, that the breastbone pain is from my AS and recommended upping the dosage on my Methotrexate script if the pain cannot be managed by NSAIDs. I told her I’d monitor the symptoms and check back in at a later date.
Needless to say, I left my rheumatologist that day with more questions than answers. Do I have Crohn’s in addition to ankylosing spondylitis? What about psoriatic arthritis? Do I just live with these itchy, painful psoriasis spots? Is there nothing to be done about it?
I was definitely taken off-guard with the attending physician’s lack of certainty in regards to my symptoms and her eagerness to rush through my appointment. I didn’t handle it well and that’s on me.
When it comes to doctor’s appointments, I always say “you are your best advocate”. I try to put that into practice, knowing that doctors don’t have all the time in the world and don’t always ask the right questions. Instead, it’s up to you as a patient to arrive prepared, to write down and discuss all symptoms, and to get through each of your questions one by one.
For the most part, I succeed. But this last doctor’s visit was a disaster. I didn’t leave the clinic feeling better prepared to manage my disease. Instead, I left in a state of confusion. But I think failure is an opportunity to learn. I definitely failed in that visit, but will work harder in the future to slow the doctor down, to press for answers to my questions, and to make sure new or worsening symptoms aren’t brushed over without being addressed.
Do you have a question about axial spondyloarthritis you have been trying to get answered?