4 Key Factors to My Non-Radiographic Diagnosis
My diagnosis sounded like a bunch of gibberish when I first heard it.
Non-radiographic axial spondyloarthritis, what the heck is that?
Clearly, so too did my rheumatologist. Although at the time it felt more like I was being interrogated than helped, yet the expert recognized something and was simply going through the process to properly give me a diagnosis.
My rheumatologist informed me that my signs are more clinical than visual, which may cause complications in getting approvals for treatments down the road, but these were the key factors in getting a diagnosis despite tests all coming back negative.
Although I hadn’t heard of nr-AxSpA, I was already quite familiar with ankylosing spondylitis. My mother had been diagnosed about five years prior to me, and so had my aunt.
They both strongly encouraged me to go for testing.
As my mom puts it, “I just hope you can get ahead of the disease and not have it progress as bad as me.”
My blood work may not have shown elevated levels of inflammation, but the first test I did was to detect the HLA-B27 genetic marker. It only meant I was at a higher risk for AxSpA, but the presence of this genetic marker made the doctor I was seeing at the time refer me to a specialist.
For nearly two years, this was the only physical sign of what might be causing my pain and other issues. I have since had one blood test show elevated CRP levels, the first tangible sign of inflammation happening in my body.
My fitness improvements were something that concerned all medical professionals I spoke with as I awaited a diagnosis.
Despite working hard to get myself in better shape, my body was feeling worse. I was having a very difficult time recovering from workouts, especially ones using medium to heavy weights or high impact like running on pavement.
It's ironic that exercise is an important way of managing AxSpA, yet it was also key for me to find out I'm living with it.
From my first visit with my rheumatologist through to my diagnosis, each time felt like an interrogation. It was a very intimidating process because I felt like I was being inundated with questions and did not know what.
It turns out the answers I was giving were in line with the symptoms of AxSpA. Questions such as:
Where are you experiencing pain and stiffness?
In my lower back and hips.
Can you point to those areas?
I remember pointing to my hips thinking, do I really need to point out what my hips are to a doctor?
What time of day is it worst?
In the morning.
How long does the pain and stiffness last?
Usually two to four hours.
The questions came so rapidly and furiously I was doubting my rheumatologist believed I had any symptoms.
However, upon hearing the diagnosis, I was merely being asked questions related to the disease. Once I knew what I was facing, I completely understood the questioning. The questions were to help pinpoint what my symptoms were, and my answers were on par with nr-AxSpA.
Does reading AxSpA patient stories help you in your journey?