My AS Life Before Diagnosis

I know I’m considered to be one of the lucky ones. From the onset of symptoms to diagnosis, it took one full year. Kudos to those of you that dealt with the pain and symptoms for many more years, I don’t know how you did it.

Research shows it takes a person an average of 8 years to be diagnosed with AS. Here’s my journey before I got diagnosed.

The beginning

I got up out of bed one day in February of 2017 and noticed my hip was hurting. I didn’t think anything of it, I thought it would just go away as I walked more on it. At the time I worked at a restaurant, so I did a lot of walking. The walking didn’t help.

Fast-forward about 2 weeks, and I was limping and hopping everywhere. When I wasn’t moving around at work, I would stand with my right knee rested on something, to alleviate pressure on my hip.

I guess it became noticeable because my boss came up to me one shift and told me to go to a walk-in clinic to get checked out. She said she could tell I was in a great deal of pain. The next day, I went to the clinic. I never went back to work.

I went to multiple walk-in clinics

The first clinic I went to, the doctor couldn’t see anything wrong, but he gave me a few days off of work to rest. Surprising to none, that didn’t relieve any pain. I ended up having to take a medical leave off of work.

Next, I went to a different clinic to get another opinion, and I got sent to get some X-rays done on my hip. Of course, that came back perfect. The frustration with being “fine” began.

I visited my family doctor next

About a month later I saw my family doctor. She told me she could tell that I was genuinely in a lot of pain and knew I wasn’t just faking it (of course I wasn’t!). She got me to try to touch my toes, which wasn’t very far anymore, and she did some movements with my legs as I was lying down.

My doctor referred me to a neurosurgeon, a neurologist, and what she said I probably needed, a rheumatologist. She also told me to try out physiotherapy in the meantime. From this point on, I would see my family doctor on a monthly basis.

I waited 7 months to see a rheumatologist

Over the next 7 months, I would do physiotherapy weekly. I was put on antidepressants for my depression as well as to help with the pain. I was also put on Lyrica for my right leg nerve pain.

The neurosurgeon declined to see me. I saw the neurologist, but there wasn’t much there for them to see, so once again I was turned away. Luckily I got an appointment with the rheumatologist for October of that year.

I still wasn’t able to work, so in August I ended up quitting. I needed to focus on my physical and mental health first.

Seeing my rheumatologist

In October, I was finally able to see the rheumatologist. He right away sent me for bloodwork, X-rays, and a special MRI that my family doctor couldn’t have ordered.

That bloodwork would show that I am HLA-B27 positive, and the MRI would show that I had inflammation in both of my SI joints. Luckily the X-rays showed that I had little to no damage in my joints, so we caught it early.

In February of 2018, I had my second appointment with my rheumatologist where I was finally diagnosed with AS. He put me on a treatment plan of biologics and light exercise.

The journey was long…

That year felt like the longest year of my life. It was also the beginning of a new chapter of my life, and the end of another. I was 22 when I was diagnosed with AS, with symptoms from 21. I definitely feel like my young adult life was cut a little short, but I’m glad I know what’s going on with me.

How long did it take for your diagnosis? And how many doctors did you have to see before finding the right one?

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