My name is Heidi. I am 33 and I got my diagnosis of AS about a year and a half ago. I have been having symptoms of back pain and “sciatica” for about 11 years before I was diagnosed. In 2007 I got a severe attack of iritis and every eye doctor that I saw (about 4) didn’t know what was going on. Finally 1 doctor came across my file and knew exactly what was going on and ordered the HLA-B27 test and did xrays….and was able to get my iritis calmed down before I went blind. He got me set up with a rheumatologist. Well, this rheumatologist didn’t want to take up much of his time with me because I wasn’t showing any signs radiographically. He walked into the exam room and told me I probably had bursitis and then he walked out of the room. $300 well spent, NOT!
Fast forward to 2014. I still had back pain and stiffness throughout the years, but it got considerably worse after the birth of my 2nd son. Went to a doctor who basically didn’t want to treat me because he didn’t know what was wrong. Best thing he did though was refer me to a rheumatologist. Despite my apprehensions about seeing another rheumatologist, I went to my appointment and the moment I mentioned being HLA-B27 positive he became interested. I had the HLA-B27 test redone, blood work, xrays, and MRI. I was ultimately diagnosed with Joint Hypermobility Syndrome (EDS-II, but not confirmed by genetics) and Ankylosing Spondylitis. The damage is now seen on xray. I am not fused yet, and hope to never to get to that point. I try to stay positive about the future and do the best I can to live a normal life.
North Dakota United States of America