I put myself in a panic again by looking at videos of people with severe disease on YouTube.
Looking up information online is like watching the news or reading the newspaper. Good news doesn't sell, so the majority of what's in the media is bad news.
The majority of people with AS are doing well and out there living their lives. They don't have the time or a need to visit a forum like this or post videos on YouTube. That means much of the information online is skewed.
You already know all of this, of course. But you obviously need to be reminded.
You have no idea how good your posts make me feel. I’m so thankful that you take time to reassure me even when I’m being a stubborn basket case. I wholeheartedly thank you.
Of course it’s something I know and something I told other ASers when they were in the dark place I’m in now. It’s just so, so hard to be rational when you’re anxious.
I guess I’m trying to find something online that will tell me « Hey, you’ve had symptoms for maybe 10 years, you still have perfect spine mobility, perfect hips and Enbrel kept you almost pain free for six years. You’re not a severe case. Treatment will progress. You will be fine and won’t end up deformed and fused all over. »
But nothing can guarantee this. I can only hope. My neck ROM has decreased by half during the 4 years of untreated inflammation. I don’t want to lose the rest. I don’t want to fuse. I’m scared. I know I should be thankful that a decade of symptoms have not taken away any of my mobility. The doctor even said my lumbar spine was more flexible than most healthy people.
That’s why I research online. To find someone similar to me who’s now older (I’m 32) and still ok. But I never find that. Only stories of crippling pain, hunched backs and fusion....
Sorry for the long post.