- Come prepared with a detailed list of your symptoms
- Typically your GP will book you in for a blood test for 1. The HLA-B27 gene variant and 2. Your inflammatory markers (ESR and CRP)
- X-Rays help show any potential damage or bone fusing and an MRI scan will usually provides final confirmation by revealing inflammation
According to CreakyJoints, on average, it can take more than 10 years for patients to receive their ankylosing spondylitis diagnosis.
This is shocking because missing or misdiagnosing this condition is horrible.
Ankylosing spondylitis is incredibly painful for the patient, and being shuffled from pillar to post and constantly being told “it’s an injury” or to “see a physio” really doesn’t help.
Patients may also receive treatments that are ineffective and could even make things worse.
The good news is if you are armed with the information we’re going to cover in this article, you really can fast-track a diagnosis. The problem is the diagnosis is often missed because…
a) Often patients themselves assume it is a type of mechanical back pain.
Most wouldn’t even entertain the idea that they could be suffering from an autoimmune disease. Autoimmune diseases and lower back pain? It’s not something that would be on most people’s radar.
b) Doctors have to deal with a LOT of patients reporting back pain. As many as 540 million people worldwide are affected with back pain at any one time, and 80% of us will experience it at some point in our lives. Given the unnatural lifestyles (sitting at a desk all day) so many of us lead, ankylosing spondylitis is far down the list in terms of leads to pursue.
While understandable, the prevalence of misdiagnosis isn’t acceptable. There should be a greater knowledge and understanding of this disorder. If there was, it would save patients years and, in some cases, decades of pain.
The reality is this:
You need to be your own champion
In an ideal world, we would have a perfect healthcare system.
But this is a fairly complicated disease.
Healthcare professionals will often have had a minimal amount of training or exposure to it in medical school.
In a world where back pain is unbelievably common, unless you are really pushing your case and asking the right questions, you will unfortunately become another statistic.
The aim of this page is to absolutely stop that from happening and to give you all the information and tools you need to ensure you get a swift diagnosis.
Remember, there is nothing lost here by speaking to your doctor.
What is at stake is you spending potentially years, even decades, unwittingly causing more damage to your spine and suffering greater and greater pain.
What is involved in diagnosing anyslosing spondylitis?
If you remember, one of the key features of this condition is inflammation.
That is the ‘itis’ bit of Ankylosing spondylitis.
So some of the diagnostics involve trying to identify inflammatory markers.
But there is one simple test you can take which shows if you have a specific gene called HLA-B27.
This gene is present in around 90 to 95% of AS patients.
Not everyone with AS has this gene, and not everyone with this gene develops AS. However, if you present with symptoms and you have the gene, then it tends to help fast-track diagnosis.
They will also want to do X-Rays and an MRI scan, but getting that blood test booked in is absolutely essential.
At the same time, they can also do a blood test to examine your inflammatory markers.
These markers are called CRP and ESR. They help show if your body and immune system are fighting something (such as inflammation caused by ankylosing spondylitis).
The kind of results they get on this test would be similar to what they would see if you were fighting, for example, a cold.
So if you are otherwise completely well but suffering what could be described as ankylosing spondylitis-like symptoms, then this could be more evidence.
It doesn’t specifically reveal whether your body is fighting inflammation on the spine, it just shows that your body is fighting something.
Then you have X-rays and the MRI scan.
I’m putting these ones last because they really help cement the diagnosis and provide that certainty, particularly the MRI scan.
In most cases, you will have X-rays first as they are a quick, easy (and cheap diagnostic tool). The X-ray is great at showing up any potential damage caused by AS disease progression, such as bone fusing.
MRI scans are expensive, but they do provide strong confirmation for a rheumatologist to provide that final diagnosis for AS. That’s because they can reveal inflammation.
The best way to approach your GP
Come prepared. Write out everything you might need in advance as bullet points.
When you first started getting symptoms (your age), frequency, and location of flares, where in the body you experience pain.
Do any of your relatives have either ankylosing spondylitis or rheumatoid arthritis? Check in advance.
Clicking ankles and knees are relevant, so is rib pain, so are fatigue, cramps, and lack of sleep. Don’t leave anything out.
Present them with a set of honest, clear, and concise symptoms. If they are not forthcoming with putting you forward for tests for ankylosing spondylitis, then be ask them.
Make it clear that you would like to have a blood test to see if you have the HLA-B27 gene and the blood test to check your inflammatory markers as well as an X-Ray.
As long as you do this politely and calmly and you really drive home the pain you have been in as well as specifics of your symptoms, you should get the ball rolling.
One thing I was able to say when talking to my GP (and this was true) was that my physiotherapist suggested he thought that I may have AS based on his examination of my spine and posture and the pains I was experiencing.
This really spurred her into action, and she was fantastic at organizing a raft of tests right there on the spot.
Still getting nowhere?
You can always see another GP. If you’re experiencing AS-like symptoms, don’t take no for an answer. It’s better to find out one way or the other. This is your health at stake.