The Tricky (And Long) Road to Diagnosis

Hi, my name is Shane Derbyshire. I am a chiropractor from Norwich (in the UK) and I was diagnosed with axial spondyloarthritis (axSpA) in 2018. I would like to share my own experience as a chiropractor with this condition and my journey to getting a diagnosis.

The Start to My Journey

In 2017, I started to get a lower back ache that seemed to be made worse by sitting still and was a kind of back pain that I had never experienced.

Exercise and movement seemed to improve things, but no matter what I did – the pain persisted!

It should be kept in mind that I am a chiropractor, so it was starting to prove quite frustrating that I couldn’t shift the pain.

Something wasn’t right.

I was quite stressed at the time as I was starting my own business and had also moved into the city. There was a lot of upheaval in my life. I put my lower back pain down to stress and thought that it would eventually pass.

But fast forward a few months, and symptoms began to progress.

A Pain In the Eye

I woke up one morning and I thought I had something in my eye. It was painful when my eyes focused on nearby objects and when I looked at anything bright.

I looked in the mirror and one eye was bloodshot. Very odd!

My clinical mind started to kick in.

The symptoms lined up with something I had studied before. “This might be uveitis!”

A few moments passed.

“Oh no! I think I might have ankylosing spondylitis!”

It began to sink in that there may be a connection between these symptoms that I had not been able to explain before. I started to recap what I had learned at university and I ensured that I knew what the right protocol was to get a diagnosis.

Knowledge is Power

I went to my ophthalmologist appointment knowing that I may have this condition so I could find out how I would be managed after this visit. And that is exactly what I did.

I ensured that they were aware that I had lower back pain (which was unusual for me) and I also ensured that I was being sent for further tests to rule out the underlying cause of my uveitis.

Many people don’t have the luxury of the background knowledge I had, and can become lost in the system and have to wait many, many years until they are diagnosed. I know I was very fortunate in this regard.

The ophthalmologist and I discussed the possibility that the symptom in my eye could be a manifestation of another underlying condition – axSpA.

Diagnosis Tip – Ask clinicians if there might be any underlying reason for your unexplained symptoms.

The First Major Step Forward

Once I was diagnosed with uveitis and after a difficult conversation with the ophthalmologist, I was sent for further tests.

The test for the HLA-B27 gene was ordered, because many people who have axSpA also have this gene.

It came back positive. Brilliant! One step closer to a diagnosis.

Once I had a test result that said I was HLA-B27 positive, this opened up a lot of other possibilities.

Diagnosis Tip – Ask for an HLA-B27 gene test to see if you have a genetic predisposition to this condition.

[Editor’s Note: HLA-B27 is a normal gene found in about 8% of the Caucasian population. Generally speaking, no more than 2% of people born with this gene will eventually develop ankylosing spondylitis. The association between AS and HLA-B27 varies among different ethnic and racial groups. It can be a very strong indicator for some, in that more than 95% of people in the Caucasian population who have AS test positive for HLA-B27. However, close to 80% of AS patients from Mediterranean countries, and only 50% of African American patients with AS are HLA-B27 positive.

Other bloodwork that can at times be helpful includes the erythrocyte sedimentation rate (ESR) test, also known as SED rate test, and C-reactive protein (CRP) test. These tests check for markers of elevated inflammation, which may indicate systemic arthritis, among other things. We’d like to note that not everyone with AS will have elevated inflammatory markers, nor test positive for the HLA-B27 gene.

The Confirmation

Now that I had a history of uveitis and a positive result for HLA-B27, I was then referred to a rheumatologist.

He recommended a specific “T1 weighted” MRI that can be used to detect inflammation within the spine.

The results came back positive for inflammation in the sacroiliac joints and indicative of axial spondyloarthritis.

There it is. In writing. The explanation to my 18 months of symptoms.

It comes as a relief, but also as a blow. It is now confirmed that I have a chronic illness.

But now at least I can get the right help, and have a good chance of positive outcomes with this disease. And this is why early diagnosis is so important. Without the right diagnosis, we will not get the right help.

Diagnosis Tip – Ask for an MRI to detect the presence of S.I. joint inflammation.

In Conclusion

So that is my experience in getting a diagnosis. I have been one of the fortunate ones who got a speedy diagnosis. I know that this journey is often wrought with potential missed opportunities and oversights, which can lead to long delays. My hope is that we will all move toward the day when a speedy diagnosis of axial spondyloarthritis is the norm everywhere.

Thank you for reading!

Shane Derbyshire is a GCC registered Norwich Chiropractor who has been practicing Chiropractic in Norfolk, UK since 2015.