Hello, AS’ers! My name is Guyla Galindo (aka ‘gg’ – it’s a secretarial thing). I’m 59 years old and live in Central Washington state. I have ankylosing spondylitis (AS), fibromyalgia, chronic ptsd/depression, and polycystic kidney disease. I remember symptoms of AS as a child. My mother referred to the pain in my legs, hips, and back as ‘growing pains’. She would hear me crying in the middle of the night and come with an aspirin. It didn’t help, but I would eventually fall asleep. Even as a child, I fought fatigue and minor range of motion issues. I was finally diagnosed in about 2001 or 2002. AS was, and may still be, considered a man’s disease, I was re-diagnosed three times. Each time I would go to a new doctor or pain clinic, they argued the AS diagnosis. So I would go thru the testing, xrays, MRI’s, and CT scans, blood work, and physical exam, not to mention the emotional distress, each time. Finally, after arguing with my rheumy, she ordered a nuclear full body scan, at a whopping $10,000. It showed everything. The fourth time, rediagnosis was brought up, I said no. “Dr., please read the file. I had a nuclear full body scan and it shows everything.” He looked at me for awhile and said, “Well! I’m not going to give you one!” “I don’t want another one. Please, read the report.” He left the room and came back with a prescription for Enbrel and Celebrex. I ended up trying Enbrel, Humira, and Simponi and had bad reactions to each, ending with an Internist taking me off biologics. She said that considering my age, reactions, along with the threat of cancer, biologics were not a good choice for me. Currently, I am using Celebrex for my AS (it also helps with the fibro). It works great for me so far. And I am very grateful. I find it difficult to curse AS, because of all the awesome friends I have met on AS support sites. I met my first ASer, face to face, this year. One of my Facebook AS friends visited from Wales. He was here for two weeks and we had a well deserved blast. It went pretty well being active (well as active as I can be – LOL) with another ASer. I was concerned I would not be able to keep up with him. I use a wheelchair for any kind of distance. But everything worked out great and I need not have worried. Yes, AS hurts like hell, but there are awesome benefits, as well.
Washington, United States of America