I think I'm actually improving. My anxiety is much less and this dialogue with you and the other good people here has helped me tremendously. I've always been someone who's worried about the future even before I had AS. This disease will kinda force me to live in the now and change my way of thinking.
I do have AS. In 2012 after about 3-4 years of symptoms my x-rays showed erosion in my sacroliliac joint on one side. The rest of my spine was clear. I was put on Enbrel two months later and I'm still on it to this day. I barely had any pain until it started creeping back about two months ago.
My ROM is normal in my spine for all movements, and strangely my lumbar spine movement is even above average. I can touch the floor without bending my knees.
My neck has always been my main concern. It's the part that's most affected even though I didn't have any radiographic evidence in that region in 2012. I have about 80 degrees rotation to the left, 45 degrees to the right, with normal up and down and nearly normal tilt. But when I'm flaring it's the first section that loses motion. I always feel like my muscles, tendons and ligaments are very tense, almost calcified.
I normally don't have pain in my neck if i'm not stretching it while flaring. On a normal day it's just tight but painless.
I'm scared about my neck because I think it's the thing that people will notice the most. If you can't turn your head at all people start asking questions that I don't want to answer. And I think a stiff neck gives someone an odd look. It's stupid I know. And superficial.
Does your dad have any movement in his neck? Has he been fused for a long time?
Thanks for talking to me. Your posts do help. A lot. I wish you the best.