Ankylosing spondylitis is a chronic inflammatory disease that affects the spine, causing pain and stiffness. It also can affect other parts of the body, including your eyes. I was diagnosed with AS when I was 31 years old. My journey to diagnosis was different than most of the people I have talked to. I consider myself lucky to have a caring team of doctors to lean on.
It started after I had knee surgery. Nothing too crazy. I had played competitive sports my entire life and just needed to get some stuff cleaned up. I was playing hockey at the time, and I had scheduled my surgery to coincide with our off season.
November 2003 came and surgery went well. My knee was healing and I was on schedule to resume playing hockey in March of 2004. I had played in a couple of pick-up games, and everything was as good as new. Then the week before Easter happened. I had an upper respiratory infection that I was fighting. And as guys tend to do, I didn’t go to the doctor. On Easter morning, my wife took the kids to church, and I thought I was staying home. Little did I know that my mom was on her way to drag me to the ER.
When we arrived at the ER, I was told that I was dehydrated. They pumped me full of fluids and medications and sent me on my way. I’m back to feeling great in no time and start playing hockey again. After my first game back, my knee swelled up HUGE. That landed me back at the orthopedic surgeon again. He drained the fluid off my knee and said it didn’t look like an infection. We chalked it up to overdoing it a little and not giving my knee enough rest. I tend to do that! I ended up back in his office four more times in 5 weeks to get that same knee drained. He was stumped on what was causing all of this inflammation.
On my last appointment, my orthopedic doctor walked me down the hall to a rheumatologist that was in the same office. He told her that he was stumped on what was causing all the inflammation, and he thought that maybe she could help find an answer. If my doctor hadn't taken this extra step, there is no telling how much unnecessary pain and suffering I would have had to go through. She could have easily said I am not currently taking new patients, as she wasn’t at the time. But she literally put her afternoon on hold just to check me out.
We thoroughly went through my medical history and my family’s medical history. Every little ache was documented, no matter how insignificant I thought it was. I kept trying to dismiss everything as “well I played sports, that’s why I hurt,” but she wasn’t having it. We started doing more lab work and imaging than I had ever done before. Literally from head to toe, I was X-rayed, MRI’d, and scanned.
After my rheumatologist had all the information she needed, she diagnosed me with ankylosing spondylitis. My upper respiratory infection had spread to my joints (reactive arthritis) and “awakened” my AS. I am also HLA-B27 positive, so that wasn’t in my favor either. HLA-B27 helps distinguish between self and foreign, harmful substances for your body’s immune system. It can also be useful in diagnosing illnesses such as lupus or rheumatoid arthritis because it allows researchers to identify which proteins within an individual may not function properly under certain conditions. At the time of my diagnosis, AS wasn't well-known and many people who had it were often misdiagnosed with something else.
I am so thankful that I had doctors that cared enough to not only ask the right questions, but to make sure I answered those questions truthfully. She not only didn’t dismiss my pain, she didn’t let me dismiss it either. She taught me to be my best advocate with other doctors. And that’s my advice to anyone reading this: BE YOUR BEST ADVOCATE.
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