My Ankylosing Spondylitis Diagnosis Journey, Part 1
First in a series.
When I first started having symptoms of ankylosing spondylitis (AS), I was in my mid-20s which is right in the middle of the age range of when most people receive a diagnosis. How fun! I was doing things that most people that age do. I’m not ashamed to admit that I was partying, staying out late, and eating whatever the hell I wanted. I had a particular penchant for — wait for it — half-and-half lattes.
I didn’t work out very much, either. I was disconnected from my body’s needs and indulged in bad food and alcohol while running on little sleep. I was also attending grad school, working full-time, and in a relationship that was, well, toxic.
My body sensed the crash before I did. Too much stress, work, and fun, too many sleepless nights. I was constantly pushing myself past my limits. It was as if the disease, which is immune-mediated, crept out of hiding when I was at my most vulnerable.
I never thought “burning out” would happen to me. I believed I would always be perfectly healthy. I was a doer, a maker, a creator. I was an engine. In short, I was burnt out, and my first AS symptom was the proof.
One day I woke up with one bright, red, and extremely painful eye. When I say “pain,” it was like hot daggers piercing through my eyeball. I locked myself in my bathroom with the lights off as light worsened the throbbing pain inside my skull.
My sight was blurred. I felt as if I were being punched and burned at the same time. On the brink of collapse, I hobbled into my local optometrist’s office. He said I had contact burn.
While I knew it could not be contact lens burn, I took some drops and left. This was my first experience with uveitis.
At that time, doctors began to represent — ironically — a barrier to my wellness. A short time later when I complained of feeling tired, foggy-brained, and weak, my GP told me to eat better and work out more.
The uveitis became chronic. One eye was frequently flaring and getting worse with each flare. I finally saw an ophthalmologist. He took one look at me (sobbing and about 40 years younger than the other patients in his waiting room) and pulled me into a dark room. He fed magical steroid drops into my eye, and after about an hour, I felt human again. The war raging inside my head had quieted, but my eye was still red. Uveitis, he explained, doesn’t “just happen.” The inflammation was coming from somewhere.
Over the next few years, I was tested for several diseases: sarcoidosis, Lyme disease, and rheumatoid arthritis, to name a few. I had none of them. No one was checking the boxes for ankylosing spondylitis because I experienced none of the most common symptoms: back pain, stiffness, and gastrointestinal issues. I was tired and my eyes flared, but it wasn’t enough. I became a mystery.
Then, one day I was talking to my dad when he mentioned having AS. Although he had daily aches and pains, his symptoms weren’t severe. I researched tests for AS and found information about the HLA-B27 gene. I visited my doctor and demanded that I be tested. The results were positive but inconclusive: The HLA-B27 gene is associated with AS, but you can be HLA-B27 positive and not have AS — and you can have AS and not be HLA-B27 positive.
I was about 27 at this time and I still had no back pain, which is one of the diagnostic criteria for AS.
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