Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Anyone else happy to hear they have AS?

After years of all the same BS everyone else with this disease goes through, I was relieved in Feb to finally figure it out with the help of my PCP. Everything made sense. But I had to wait 3 long & anxiety filled months until I could get into see the rheumatologist. When the day came, I was so ready for that appt and get going with treatment. Then, at the appt, she told me she didn't think it was AS. Just some tendonitis. UGH!

2 weeks later I was back to wondering if I was crazy, imagining the pain. Then she called with results of my x-rays and bloodwork she ran "just to rule it out" and said that actually, I did have AS. I was definitely relieved it had a name, though simultaneously frustrated at all the docs that dismissed it - as if it is normal for 20-something year olds to periodically crawl around on the floor due to incredible joint pain!

I can say yes.....I herniated a disk in 09 at work, and after 3 workers comp drs/12 weeks of phys therapy, the orthopedist i saw told me i was faking it, and reported that to my work. Im surprised i wasnt fired. stupid ***** (<--i did that on my own LOL)

took over 2 years and 3 other drs to figure it out.

I was happy to know what was wrong with me. Had symptoms for about 5 years went through 4 doctors before diagnosis. I always knew something was not right with me and no one listened, doctors or family. Now that I know and down because there is no cure and it is still new in the medical world.



I see in your signature everything failed. How to you handle with your AS?

Hi,im newly diagnosed, just like you guys,feel sad that i got this uncureable disease,but yeah happy that i found out whats been goin on with my back for this past 6 years......

I'll give a big YES to that! I was diagnosed 7 weeks ago after 15 doctors; an exhausted medical aid and quite demotivated.
For me, not knowing was the worst.
All the doctors I went to, all picked up that there was something wrong in my left arm, but none could figure out why. One doctor joked, saying that they should hold a medical convention, just for me!
Finally a doctor took pity on me and suggested I see the best rheumatologist in the country- took 4 months to get an appointment, but at least I have something! And when I explain to people why I hurt or why I'm so tired, theres a legit reason behind it and they can start to understand whats going on. They'll never really get to understand what it's like to have this horrible thing, but for the most part, my friends and family have been really supportive and for that I'm very GRATEFUL!

I was very distraught for a while when I was diagnosed, feeling like I'd been robbed of my youth. Like who wants to wake up feeling as if they have rigormortis every day?

But then I realized it gave me a reason to go lift every day. I gained my confidence back. I realized I had a great opponent that I needed to face down. It gave me purpose. Same with Crohn's. Obviously we have ups and downs but I'm glad I have this great challenge.

When things are good, I feel galvanized and I know who I am.

I think it's a double edged sword. On one hand it's good to know and understand ways to maybe slow the disease or manage the symptoms. And also good to know that most symptoms and physical issues are due to the AS (after ruling out other stuff). Plus as Fletcher said it can be a real motivator in terms of pushing one's self to overcome a great challenge.

But on the other hand it definitely changes things and my day to day experiences, goals, and abilities and while I embrace the challenge and am motivated to push to improve myself, it's still a drag sometimes to be in pain.

I chased a dx for about three years. Tossed from one Rheum to another. Was totally dismissed by hosp for special surgery. As far as I am concerned they can go to hell. I started researching my symptoms and found a forum wjere a British guy wrote his exp and it was exactly like me. And he was dismissed. But finally was told he had AS. In looking it up I saw every symptom including toes hurting, which I always found strange and made me think I was going crazy feeling ao poorly with no answers previous to learning about AS. I called referal lines demanding names of rheumies who specialize in AS and found one who takes my crappy ins and that is how I started to get help.

I started Humira 2 weeks ago. Initially reduced pain a lot. But induced dyspnea. We lowered dose and in the middle of the night I woke from severe ribcage pain. So I am dissapointed and confused. I do notice swelling reduced in neck and head. Hip pain still gone. Any guidance would be appreciated.

Yes,i am thrilled to have a name and chance to feel better. I was tired of being a professional patient!