My Non-Radiographic Diagnosis Journey
Run, turn, repeat.
I hate the beep test, and it was a fitness test gone awry that spurred my path to diagnosis.
I was determined to prove myself
I was one of about 40 up-and-coming hockey referees in British Columbia at the upgrade seminar in September 2018. The previous day I had set the fastest time of our on-ice testing, and I was determined to prove myself in the off-ice testing too.
I was about three-quarters of the way to our expected result on the beep test when I noticed something wasn’t right. My fingers started tingling. It started in my fingertips, but true to hockey culture I tried to push through it.
The tingling extended into my hands and up my arms, I continued to push through it. Then my hands went numb, so did my arms. The sensation went up my arms and concentrated between my shoulder blades.
I knew I had to see a doctor
Dejected in my failed test result, I stepped to the side of the gym. I was greeted by concerned faces, like they were staring at a ghost. Apparently, my entire complexion had turned completely pale. I knew I had to go visit the doctor.
I have a family history of ankylosing spondylitis; both my mother and aunt have been diagnosed and they’d been encouraging me to get tested. Their message was simple: get ahead of this disease. My mother was diagnosed in her 50s and she wanted me to avoid many life complications she had faced with early diagnosis and treatment.
I thought I just needed to stretch more
Still, after the failed beep test, I went to see the doctor, explained my circumstance and began the testing process for AS. It started with a blood test and a few weeks later I returned to the doctor’s office.
"Normal? Are you sure?"
“Your blood work results came back normal, but you are HLA-B27 positive so I’m going to refer you to the rheumatologist,” was what I was told.
I remember being surprised: Normal? Are you sure?
So, the waiting process continued and 10 months later I went to see the rheumatologist. More blood tests, normal. An x-ray, normal. Next was an MRI.
It had been so long
By the time of the MRI it had been nearly 18 months since my first visit, and I didn’t feel any closer to getting results. I remember my thoughts at the time were so concentrated on one thing: what if the MRI doesn’t reveal anything either?
Fast-forward to January 2020, I revisited my rheumatologist. The MRI results were in. I sat down and the meeting began the same way, here are your test results. “The MRI results came back normal.”
I was stunned.
The diagnosis: non-radiographic axial spondyloarthritis
My specialist continued with what felt like an interrogation. She told me I was being diagnosed with non-radiographic axial spondyloarthritis and to start a new prescription.
I went home completely confused, but with a little research, I realized nr-AxSpA was consistent with everything I was experiencing.
I was lucky. My diagnosis only took 18 months, albeit 18 very confusing and frustrating months. The combination of family history and a good rheumatologist expedited a process that took others in my family decades to get an answer.
Today it’s still confusing, uncertain and often frustrating. Yet, I find solace in having a diagnosis and that better days lie ahead.
Can you tell when a flare is coming?