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My journey to an AS diagnosis began over 14 years ago. I started to have low back pain on a daily basis. After several months I saw my pcp. All tests done were normal. I was told to exercise.
Over the next 2 years the pain was persistent and had spread into my hips. I saw several doctors who all said I was fine. Some prescribed PT, while others told me to take ibuprofen. I was starting to feel like it was all in my head. My hips got progressively worse, but there were no answers. This continued for the next 10 years. Each year, I became more restricted on what I could do.
Finally two years ago, my pcp had found a new rheumatologist for me to see. My first appointment, all of my blood work had come back negative for arthritic conditions. The doctor ordered xrays and a pelvis ct. She called me a few days later, saying there was a positioning error on the ct, and she wanted me to have another to confirm. When the second one was done, she had the top radiologist in her facility review it. Their joint diagnosis came back as AS. My left SI joint was completely fused, and my right is about 75% fused. Thankfully even though I had a lot of pain and inflammation, my spine had not begun fusing. I was immediately put on biologics to slow the progression of the disease.
I still am in daily pain. My movements are restricted. I have small and large joint involvement that is getting worse. The fatigue is never ending.
It is incredibly frustrating that AS is still a man’s disease, or a genetic disease. I have no family members with AS, and I am negative for the gene. Yet, here I am. Another face of AS. I suffered for 12+ years before diagnosis. What would my life be like if I had received treatment early on?


Iowa, United States of America

One Response to “Nikki”

  1. Dear Nikki,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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