Last April I was diagnosed with seronegative Ankylosing Spondylitis. Getting there nearly broke me. And then it got worse.
It started with back pain in 2023 that I brushed off - too much sitting, a few stretches and it went away. Until September 2024, when I woke up and could barely make it to the bathroom. Ended up in the ER. Neurology consult said sciatica, gave me a shot, sent me home.
The pain came back. Physiotherapy helped for about a week each time, then it crept back in. I kept thinking rest would fix it - the way your body heals when your sick, you just need sleep. Except sleep made it worse. I started waking up at 3am locked in pain, couldn't fall back asleep, dragged myself through work in a fog. I got depressed. Not "feeling down" depressed - I ended up with a psychiatrist because I didn't want to be alive anymore. Thats what undiagnosed chronic pain does to you when everyone keeps telling you its nothing.
In March, the pain spread to my knee. My physiotherapist - not the ER, not anyone else - was the first person to say "this is something deeper, get to a rheumatologist." An orthopaedic surgeon looked at my September X-rays, saw inflamed SI joints, asked about family history. My father has AS. His neck is fused. The ortho prescribed real painkillers while I waited for rheumatology and I swear to god - when the pain lifted for the first time in months I sat on my couch and cried.
The rheumatologist confirmed it. Seronegative AS. I'm HLA-B27 negative, which I'd been clinging to as a reason it might be something else. It wasn't.
I grieved. Then I got to work. Changed my diet, started meditating, took NSAIDs for a few months, built a routine. The pain became managable. I started to feel like I had a handle on my life again.
Then in December, I went to my immunologist - a doctor I've been seeing since childhood, over 20 years. She read my rheumatologists report, didn't ask me a single question about my symptoms, and told me I don't have AS because I'm HLA-B27 negative. Just like that. She suggested maybe IBD. I mentioned my nail changes - "okay, maybe psoriasis." I asked how to get that checked. "Nobody will check that here." Cool.
I went home and spiraled. For months I'd finally had an answer. Now a doctor I deeply trusted was telling me its wrong. Then I looked at my own lab results and noticed my calprotectin was elevated. She hadn't even mentioned it.
In January I got a second opinion from a rheumatologist in Vienna. He confirmed the AS diagnosis, disagreed with my immunologist, and told me to get my gut and skin checked. IBD was ruled out, still waiting on the psoriasis tho.
I'm 29 and I've had symptoms since highschool that got dismissed as growing pains and period cramps. My diagnosis is less than a year old and its already been confirmed, taken away, and confirmed again.
Has anyone else had a doctor just flatly dismiss your diagnosis? How did you handle it - did you stop seeing them? I still don't know what to do about my immunologist. Part of me wants to trust her because shes known me my whole life. The other part is furious.