I am a 50 yr old Caucasian male who has had AS since the age of 18. My first symptoms were swollen knees and ankles. I was seen by my family physician who thought I had injured them somehow. He sent me for X-rays which were all negative so then he decided it was an infection and put me antibiotics.
Symptoms got worse. After the third visit to him and the third round of prescriptions I told my Mom that he had no idea what was wrong with me and not to get the prescriptions filled, so she took me another doctor that afternoon who immediately diagnosed me as having Juvenile Rheumatoid Arthritis-he drained 50 cc of fluid off each knee and started me on steroids and aspirin. I improved some but still was having a lot of swelling. I was referred to a doctor of internal medicine who agreed with my diagnosis even though my RA test was negative but he took me off the steroids.
Within a couple of weeks I was feeling much better and within about 6 weeks was back on a tractor daily(I lived on a farm). I was pretty much symptomatic for about 2 years when i had another minor flare-up which lasted only about a week. I have been on every nonsteroidal anti-inflammatory that came out I think and did really well for a number of years with only an occasional flare-up.
I have moved several times and so have seen a number of doctors, all of whom have pretty much accepted my diagnosis of JRA except one who thought i might have AS and tested me for HLA-B27 which is negative so he too decided it must be JRA and continued me on NSAID's. Then at about age 35 i started having TMJ problems, iritis, and hip problems which would not respond to usual therapy.
My wife called the Emory University Rheumatology Clinic and got me an appointment. Dr Stephen Miller was convinced I had AS even before he sent me for X-rays-which confirmed his diagnosis. He started me on Asulfidine and Naprosyn which I took for about 3 yrs but had to come off of due to intestinal problems. I remained fairly symptomatic after coming off the meds so I just took aspirin as needed. the I started rapidly loosing neck and back mobility.
Then while enjoying a day at White-Water park about 3 yrs ago, I flipped off a tube on one of the rides and hit the back of my head on the bottom of the pool which caused a compression fracture at T-5. I immediately lost about 15 degrees of posture and have never been able to regain any movement. About a yr ago I started having lower extremity swelling (not joints) and stated taking diuretics. I have just recently found out that my kidney function is down to 50% of normal-either from the AS or the long term use of NSAID's. I am still undergoing the workup for this so I'm not sure what lies ahead but right now the future doesn't look too bright.