I sure don't beat 1981 but I first presented with sympoms in 1985 after trip to China where i got terribly sick from food poisoning. I was 29. While back pain came 1st within weeks of returning to USA, June to.... forever, it wasn't until my first case of uveitis that I was referred for HLAB27 testing by opthomologist who'd worked in Russia and was familiar with symptoms. So while I had full on flare of SI and reoccurring bilatral uveitis, , early diagnosis was reiters syndrome since "girls didn't get AS". Per doctors and quarter page writeup in medical library materials that i could find on HLAB27. Naprosyn was only rx given, which is when it was still a prescription. Reoccuring /chronic flare-ups' in eyes and SI were most common through 2010. With upper back and neck issues following. My first opthomologist trained me well to trust my eye sensations for early rx use. Likely because he got tired of me calling on weekends or holidays with a flare 4+! He'd say, " how did you miss it in Flare 1,2 or 3?" So while Im thankful for good training in eye care, sadly going to many rhuematologists over the years left me high and dry for back care. No one ever xrayed or looked further for dx. I believe it wasnt questioned because I have residual flexibility from an athletic background and while I described the pain - no one listened. Maybe I just accepted it since I'd lived with it so long. I did do a lot of chiropractic work and acupuncture between 1985-2009 - which while it didnt really make the pain go away - my recent rhuemy feels it likely did help in different ways. It was after a terrible case of uveitis that took me searching for a second opinion that connected me with a research/ university medical center in 2012. And while my eye news was good " am not going to go blind - yet?" my follow up with opthomologist in 2015 led me to asking for a referral to evaluate my back. Crazy enough, first physical assessment by Rhuemy gave him impression that pain was mechanical - not inflammatory. But we still did the xrays and blood tests which confirmed SI and pubic bone were fused. While I tried Humera, my sympoms worsened so I stopped after 6 mos. Now having more pain and having learned more about AS, I've been more open to Rx to stop progression already seen /felt in neck, lumbar, ribs, shoulders. So 33yrs after 1st HLAB27 dx, we are trying Simponi and then Mobic for inflammation. My personal effort has also included cleaning up my diet for inflammatory impact. My new Rhuemy who I started with in Dec 2018 has really validated the why behind my miserable existance for so many years. As she tells the residents' rounding with her during my office visits - pointing to my xray, "this is what we try to prevent". So much more is known in 2019 and I can only say to others', be the squeaky wheel with the doctor. Ask for MRIs early on. Or if pain for 10 yrs, an xray. Ask for second opinions. This condition changes us, if we let it win. Stay open and try as much as possible, stay active. Sadly, us early birds didnt have a chance. How can the doctors diagnose something they dont know about ? USA docs just had this diagnosis added to their manual in 2015. Too many lessons learned through this but patience and appreciation for the miracle of our body is top on my list. All we control in life is our reaction - hmmm, easier to accept on certain days.