My name is Shane Derbyshire and I am a Chiropractor working in Norfolk and I was diagnosed with AxSpa in 2018.
Although I had what might be described as a “textbook case”, the journey to diagnosis was far from smooth and full of opportunities to become lost in the system and trapped in no man’s land.
I wish to share with you some of my insights (from a clinicians perspective) and what this means for others who may be struggling to obtain a diagnosis- or to make sense of your own lengthy delay to diagnosis.
The start of it all
2017 was a one of those years. There was significant upheaval and quite a lot of stress and eventually it took its toll on the body and mind.
My symptoms began with a very gradual onset of lower back pain. It was so gradual that it took me a while to realise I had it. I noticed that it was particularly bad when I was sat or standing still. I was also extremely tired all the time!
Image 1 – Yawning at work!
Given what I knew about pain and the relationship to stress- I shrugged it off. “It will pass” I thought.
Weeks turned into months but for some reason the back pain still persisted. I was very active- which helped, but nothing I was doing would resolve the issue.
Image 2 – Despite being very active- I still couldn’t run from the pain
When it clicked
After a period of 8 months of lower back pain, I woke up one morning and my eye was red and painful. It was unusual. I thought that I had irritated my eye somehow but couldn’t think how.
By the third day- my eye had become sensitive to light and was painful whenever I focused on near objects.
Image 3 – red and painful eye.
“Oh no!” The cogs were turning. “I have Uveitis!”
A few moments passed.
“Oh no!” The penny dropped …… “I think I have AS!”
All of my symptoms now made sense. A few years prior, I had an episode of rib pain at night and almost 12 months of unexplained achilles tendon pain. Now I have had almost a year of unexplained and unrelenting lower back pain that isn’t improved (with any of my normal self-management strategies) and now I have Uveiitis!
The journey begins
After a swift trip to the walk in centre for my eye, I was referred for an emergency appointment the next day with the ophthalmologist doctor.
Image 4 – Opthalmologist assessment
As I am sat in the waiting room (with sunglasses on to shield my eyes from the painful glare of the lights) I notice a poster. The poster is from NASS.
The poster said “Do you have Uveitis?… Do you have back pain?….You may have AS”. Brilliant, I thought. I have my fingers crossed that the ophthalmologist will be aware of the link between my two core symptoms and make the necessary referral.
After I have my eye examined- I am told that I have Acute Anterior Uveitis.
“Have you had much lower back pain recently?” I am asked. “Yes- for almost a year.” I am pleased that I am being asked the right questions but for some reason it now looks as though she doesn’t know what to do or say next.
From my own perspective, I am very aware that she now needs to make the necessary referral for further tests- HLA B27 gene test and further imaging with MRI. But I can see that she is about to wrap up the visit. “This doesn’t make sense” I thought.
She goes on to explain what medication I need for my eye and that is it- No further action required.
I then ask the question very reluctantly as I don’t want to appear pushy.
“Do you think it might be a good idea to investigate the back pain and uveitis further?”.
Cross roads
It is in the moment that I become extremely aware of how the delay to diagnosis is so long.
Despite the opthalmologist doing a fantastic job of diagnosing my eye complaint and also considering reasons WHY I may have uveitis, it is clear she is not certain on what to do next when someone has hallmark symptoms of AxSpa.
Image 5 – one decision can take you a long way off the path
If I was not very aware myself of what needed to be done then I could have been lost in the ether at this point. Sent on my way with no explanation of why an active chiropractor has persistent back pain.
There is a difficult exchange between myself and the ophthalmologist on the importance of further investigations and it is decided that a letter be sent to my GP to recommend me for HLA B27 gene test.
Enter rheumatology
My blood tests are back. I am HLA B27 positive. A referral is made to rheumatology for strong suspicion of AxSpa.
I thought the initial consultation would be plain sailing. I have a history of; back pain made worse by inactivity, uveitis, chronic tendon problems and HLA B27 positive. “this is a no-brainer” I thought.
Despite this. I would describe my initial consultation with the rheumatologist as another “near miss”.
I sat down and described my history of symptoms. I looked back at a rather doubtful rheumatologist.
He checked my range of motion. “You have quite good range of motion” he said. We sit back down and I am expecting him to discharge me – no further action required.
“Have you had rib pain before” he asked.
“Yes a few years ago – it would wake me up at night which was a problem for a few months” I replied. Bingo! His face changed.
“Ok” he said “If you had not had rib pain – I would be doubtful that you have AS. Let’s get you booked in for an MRI”
I was rather confused as I thought that I had enough symptoms without the history of rib pain to warrant an MRI but clearly not.
Clarification at last
Image 6 – MRI gold standard imaging for axSpa
Around 18 months after my initial symptoms, I had my MRI results back. “Signs of sacroiliitis indicative of axial spondyloarthropathy”.
Wow. So, that’s it. I have Axial Spondyloarthropathy. There is now no doubt.
It was a double edged sword. I now had an explanation of my symptoms. I also now had an auto immune disease.
I am one of the lucky ones. 18 months to diagnosis is fast! It could have turned out very different.
What if I didn’t get uveitis?
What if the ophthalmologist never made the referral?
What if the rheumatologist felt I didn’t have enough symptoms to warrant an MRI?
What if my MRI came back negative?
This can happen to a lot of people which is why there are a lot of undiagnosed sufferers out there. Work needs to be done in terms of clinician and public awareness in order to get people the right diagnosis and the right type of treatment (which is a different challenge all together!)
Thanks for reading.
Shane Derbyshire is a Norwich Chiropractor living with Axial SpA. Shane has more information on his blog on how to manage the condition and other back pain related issues. If you live local to Norfolk – then give Shane a call and book a consultation for expert advice and treatment.
If you have any further questions you can get in contact via email – shane@fitmotionchiro.co.uk
