How I got my diagnosis?

My first English post, as this doesn’t fit in Instagram feed 🙈!

So in 2008 I went traveling to Czech Republic and apparently from that trip got campylobacteria (similar to salmonella). I didn’t have any diarrhea or anything,so didn’t even know it was there.

Until couple months after the trip my left knee became swollen. I went to local emergency room and they said there was fluid inside my knee and drained it with a big needle.

Two weeks after that the knee became swollen again. And two weeks after that again. By the third visit we started to demand referral to rheumatologist. The waitlist for municipal central hospital was 4 months. And while I waited, every two weeks I went back to emergency room.

I started to have pain symptoms. Once so bad, that I needed morphine in the ER.

When we finally got to the rheumatologist, he didn’t believe me, I was too goodlooking and young (then 19) to be sick.

After further demands the knee was x-rayed: nothing. More demands: blood tests. I didn’t have rheumatoid factor, so nothing was wrong with me, although

they did find a positive gene HLA-B27, which predisposes to autoimmunediseases, especially ankylosing spondylitis (AS).

So the knee kept swelling: as outpatient procedure they did osmium acid treatment to my knee, to burn away the inflamed tissue inside the knee capsule. still no effect. In January 2009 I was finally put on MTX and MRI showed changes in my knee so I was waitlisted for exploratory knee surgery.

By June 2009 I had walked with crutches over a year. Knee was operated and nothing should have been wrong anymore.

But by August my knee swelled up again. So I got a private doctor to refer me to Specialized Rheumatoid hospital. I went there couple times, 1st time they didn’t believe me either. The second time I traveled there with the swollen knee, then they believed and first time it was written in medical records, that patient has such difficult disease (then diagnosis reactive arthritis) that biological drug could be beneficial.

In my local hospital doctors didn’t seem this necessary, I believe lostöy because biologics are so expensive, and they didn’t give me the referral /certificate/prescription.

Over the years my knee swell time to time, especially if I tried to come off MTX (methotrexate).

But in 2015 I started to have severe pain in my back and later in my neck. The doctor at the hospital had changed, and this one believed me. He ordered MRI for my neck and as my head didn’t turn more than 20 degrees, he wrote the referral for biologic medication immediately and diagnosed me with ankylosing spondylitis. 8 years after my first symptoms.

That’s how I got my diagnosis.

~Johanna

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