Kelly Mahoney was diagnosed with axial SpA just 20 months ago but has been experiencing symptoms for 33 years. In this blog, she shares her long journey to diagnosis and how starting treatment has made a difference to her life.
My earliest memory of back pain was at 19. The pain went from my neck down to my lower back and seemed to spasm. I went to my local hospital, as the pain was intense, was prescribed painkillers and they sent me on my way.
This was 33 years ago, and I was only diagnosed with axial spondyloarthritis (axial SpA) 20 months ago. After that first encounter with pain, I continued to live a “normal life”, enjoying clubbing every weekend and having an active life.
When I had my daughter at 25, I started to experience extreme pain again. However, I put this down to having an epidural and continued with painkillers. I moved around for a few years, and this meant I had several doctors which may have added to the delay in diagnosis.
After some research and a painful episode of uveitis (swelling and inflammation of the iris, in the coloured part of the eye), I came across axial SpA. Still the penny didn’t drop, even though I seemed to display many of the symptoms. I remember thinking I walked like a duck for the first 20 minutes on my journey to work!
I mentioned to my endocrinologist at Kings College Hospital of all my symptoms, including the fact that I woke up several times in the night, and he referred me to rheumatology. At last, a diagnosis!
I had two MRI scans and saw the department every 3 months. I am on biologic therapy and although it hasn’t been easy, I am grateful for this treatment and the fact that I no longer walk like a duck in the mornings!
I feel grateful that my endocrinologist picked up on the connection between uveitis and axial SpA. However, I feel that GPs should be more informed about axial SpA because it’s easy to go for several years on painkillers with no diagnosis.
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