My name is Karly and I was diagnosed with AS after exhaustingly searching for 10 years. I was diagnosed a year ago at the age of 29. I spent years going to rheumatologists, gastroenterologists (the AS attacked my GI track) cardiologists, orthopedic doctors…you name it. I was referred to a psychiatrist and told I was exaggerating my hip pain! I lost so called “friends” because they thought I was a hypochondriac. I can’t even count how many doctors I saw, and how many of them told me I couldn’t possibly have so much pain at the young age of 29. I was treated like a drug seeker, eventhough I never asked for narcotics, I just wanted to know what was wrong. There were times I could barely walk.
My saving grace was finding Dr. Hema Salvady. She assured me from the start that even if it took forever she would find an answer. She was the first doctor to even bother running genetic tests. I am HLA-B27 positive, which I realize by itself is not a diagnosis of AS, but many xrays and MRIs later I got my diagnosis of AS. I felt vindicated and relieved to have an answer, but scared when I saw the devastation it causes your body. My course of treatment is Humira, nabumetone, zanaflex and tramadol. I know sometime in the future I will most likely need stronger pain medication, but I will cross that bridge when I get there.
My advice to those newly diagnosed or still searching is DONT GIVE UP! You will eventually find a doctor that will listen and want to get to the bottom of your problem. AS is not the end of the road, its a bump. A pretty huge bump, but with the correct course of treatment, its possible to live a full life with this disease. We need to do the best we can to spread awareness of AS, because not everyones symptoms are the same. Awareness helps physicians connect the dots. Also, always ask for a copy of all your test results!!! You never know when a flareup might land you in the hospital, and the last thing you want is to repeat tests you’ve already had. Educate yourself about your AS…research!!
Thanks and God bless,
Pearland, Texas United States of America