My name is Jason and I was diagnosed with A.S. in December 2011, three days prior to Christmas. I was fortunate to have an incredible family doctor that was persistent in seeking a cause to my pain that led to a diagnosis in only three months. I started to show symptoms as early as August/September of 2011, and was originally diagnosed with Lyme disease. At the time I thought this diagnosis was pretty bad as Lyme also has possible lifetime side effects. When I started my antibiotics I read that Lyme disease usually gets worse before you improve due to the bacteria being killed in your body by the drugs. Well, I definitely got worse not knowing I was misdiagnosed. Over the three months leading to my official diagnosis my condition deteriorated so fast I could barely walk or move my neck. My right thumb became a “sausage finger” and was so swollen I could not flex or hold anything in my hand. I had to roll out of bed every morning because it was too painful to sit up. I’m an avid runner and all physical activity came to an immediate halt. I returned to my doctor after a month assuming I still had Lyme and had ineffective medication. My doctor did not have immediate answers for me, but I still remember him calling me on his day off because he was researching my symptoms. He referred me to a Rheumatologist where I was finally diagnosed with A.S. It took roughly three months before the Methotrexate took effect and I could return to normal activity. I vowed I would control the disease rather than it control me. I returned to running with a goal of completing a half-marathon this year and a full marathon before I turn 40. I rejoined the gym to work on flexibility and strengthening my core and back muscles. I also modified parts of my diet since diagnosis as I’ve developed sensitivity to certain foods. Even though I’m back to “normal” activity I still struggle daily with a stiff neck and sore back. Alternative methods such as Chiropractic and massage therapy have been successful, but obviously everything carries a price. After my diagnosis I wanted to pretend I was fine and not talk about it. I thought by returning to normal activity, I could hide and pretend nothing was wrong. I was having difficulty just coming to the conclusion I need to take medication every day in order to function. I didn’t want anybody to know and I just wanted to pick up my life where I left off. I still have difficulty speaking about it now, and many of my friends still do not know. Even as I start to open up on my diagnosis, there is confusion as people just don’t understand what it is, or the true affects caused by A.S. With the pain and crippling affect A.S. had on me after only three months I can not possibly imagine the stories of others that have gone years without answers. I count myself amazingly lucky and fortunate, but it upsets me that even now so many doctors know so little about A.S. and proper diagnosis. After reading the stories of others, I realize I can’t be silent. I may have been fortunate, but how many out there still have A.S. that are undiagnosed. Awareness needs to be made and it’s only done by those who have it. I wish to thank everyone that has shared their story as it provided the courage and passion for me to do the same.
Oak Creek, Wisconsin United States of America