Twin Story

Last updated: February 2022

I am 31 years old and was diagnosed with ankylosing spondylitis aged 25 after suffering pain to some extent since early teen years. My visits to rheumatology to start with were frustrating as I wasn't being listened to. Eventually, they agreed to do the MRI which showed clear erosion and inflammation.

I have been on many different medications and finally ended up on Infliximab. It is working fairly well, but I still have pain every day and flare-ups now and again.

Symptoms just like mine

I started to see a mirror image of my life unfolding when speaking to my twin. She had been mentioning pain standing at work, only in the sacroiliac region.

"Oh, it'll just be age! We're only in our early 30s!"

I mentioned over and over about visiting a doctor to see about the possibility of AS in her, after all, her identical twin has it, and there are known genetic links. After suffering for a while, and now talking about stiffness and other sore joints, she went to the GP. They agreed to send her to a rheumatologist.

Early detection

Time passed, as it does with the NHS in Scotland. My twin went for an MRI of her lower back and ultrasound of her hands. They did indeed find evidence of early inflammation. It had been caught early! It means at this stage she is only on anti inflammatories, but I did say to fight for DMARDs or biologics! I'm just glad they listened to her about her twin having an AS diagnosis, and she didn't have the same fight I had!

HLA-B27 Negative

My GP asked recently about my genetic testing, believing it to be positive for HLA-B27, however, I have the results without having had the test! It's negative, and I know this as my sister had the test in one of the first visits with her rheumatologist. There's another quite handy use for an identical twin!

Thanks for reading!
Rainbow Jen

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