A person laces up hockey skates as a large crack forms in the ice below.

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

Like a typical young man in my early 20s, I refused. I was fine, or so I thought. I only had some minor back pain and tightness in my hips. I just needed to stretch more and hit the gym.

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.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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