Non-Radiographic Axial Spondyloarthritis Diagnosis, Now What?
For sixteen years, I felt that I had this unknown “thing” wrong with me. Despite all of my various symptoms over the years, no one could solve the puzzle that was my systemic chronic pain. So many specialists, so many let downs. It wasn’t until I consulted with my third rheumatologist in April 2019 that I was diagnosed with non-radiographic axial spondyloarthritis (nr-AxSpA). After receiving my diagnosis, I thought to myself, “Now what?”
As I drove to my orchestra rehearsal after my rheumatologist appointment that changed my life, I felt like I was in a fog. I could barely concentrate during rehearsal. When I got home after my rehearsal, I told my husband the news. After I explained what nr-AxSpA was, I asked him how he felt about my new-found autoinflammatory disease that is a lifelong condition. He said, “Me? How do YOU feel about it?” The truth was that I didn’t quite know how to feel about it.
It took me so long
I spent so many years searching for a diagnosis that it felt weird to not have to constantly be searching anymore. There was always that feeling of searching for that missing puzzle piece, that missing diagnosis. I had long joked that what I needed was Dr. House, the title character and diagnostician in his medical drama TV show, because he solved obscure and relatively unknown diseases.
I had so much to learn
In a way, my diagnosis felt anticlimactic. I don’t even remember if there were tears —just the feeling like I could exhale and just BE. For the first time ever, I didn’t have to search anymore for a diagnosis. There was so much time spent on various doctor’s appointments and, in turn, the financial burden of all those appointments and diagnostic tests such as MRI's, x-rays, and bloodwork. After the diagnosis, I felt stillness and I almost didn’t know what to do with myself.
But there was a lack of information
After receiving my diagnosis, I wanted to learn as much as I could about nr-AxSpA. I knew what ankylosing spondylitis was, but had never heard of this disease that I had just been diagnosed with. I did what probably many others have done: I went to Google. What I found was there just was a lack of information compared to AS. I found myself reading as much as I could on the Spondylitis Association of America’s website and Creaky Joints.
I felt affirmed
Upon researching the various websites, I started to realize what I was reading was a reflection about myself and my life for at least the last sixteen years, perhaps dating back to my adolescence. I had chronic back and hip pain, enthesitis, flares of sacroiliitis, irritable bowel syndrome, and keratitis (thankfully, I have not suffered from any bouts of uveitis), among other various symptoms over the years. I had no damage to my sacroiliac joints that was visible on x-rays or MRI’s. My bloodwork was normal, with one of those tests being for my C-reactive protein level test, which can be normal compared to AS patients.
I'm finding community
Now that Axialspondyloarthritis.net has launched, this website will also be a useful resource tool for patient education. This year, I signed up for the Global Spondyloarthritis Summit that was on the Spondylitis Association of America’s website to learn more by watching the various presentations.
All of these different syndromes and diseases I had were being treated individually as their own smaller puzzle when they were merely pieces in the larger puzzle that is nr-AxSpA. It’s amazing to look back at my story in the frame of this new knowledge; it’s as if my own body was shadow art, but everyone was looking in the wrong direction for their own solution. Now that my doctors know which direction to look, the picture is in focus and we can start understanding what it means.
Can you tell when a flare is coming?