What is ankylosing spondylitis, and why does diagnosis take so long? ScanAlign private EOS imaging clinic, Harley Street, London
Spine & Back

What Is Ankylosing Spondylitis, and Why Does Diagnosis Take So Long?

Ankylosing spondylitis (AS) is a type of inflammatory arthritis. It mainly affects the spine and the sacroiliac joints. It causes persistent back pain and stiffness, which usually starts in early adulthood. Diagnosis often takes years. This is because early symptoms overlap with common mechanical back pain, and standard tests may not show changes until the condition has progressed.

Key takeaways

  • AS is a long-term inflammatory condition. It is not a simple muscle or disc problem.
  • It typically begins between the ages of 20 and 40, and is often mistaken for ordinary back pain.
  • In the UK, the average delay before diagnosis is several years, sometimes more than ten.
  • Standing whole-body imaging can show posture and alignment changes that lying-down scans may miss.
  • Diagnosis is a decision for a rheumatologist. Imaging supports that process but does not replace it.

What are the symptoms of ankylosing spondylitis?

The key symptom is inflammatory back pain. Mechanical back pain comes from a strain or a disc problem. AS pain is different. It tends to start slowly, often in the lower back and buttocks. It is worse after rest, especially first thing in the morning. It eases with movement and exercise, not with sitting still.

Morning stiffness Lasts 30 minutes or more. It is worst when you wake up and gets better as you move through the day.
Pain in the buttocks or sacroiliac area Often felt deep in the buttocks, sometimes switching from one side to the other. This is where the sacroiliac joints sit.
Reduced chest expansion Inflammation in the joints between the ribs and spine can make it harder to take a deep breath.
Fatigue Persistent tiredness is common. Chronic inflammation uses up energy and disturbs the quality of your sleep.

Some people also have pain or swelling in other joints, such as the hips, knees or ankles. Eye inflammation (uveitis) is another linked condition. It can cause redness, pain and sensitivity to light. If you get sudden eye symptoms, see a doctor urgently.


Why does ankylosing spondylitis diagnosis take so long?

On average, people with AS wait years from their first symptoms to a confirmed diagnosis. Several factors come together to cause this delay.

First, early AS looks a lot like ordinary back pain. Most back pain in young adults is put down to muscle strain or poor posture, especially if there is no clear injury. Family doctors see back pain all the time, and the inflammatory pattern can be easy to miss in a short appointment.

Second, standard X-rays of the sacroiliac joints may look normal in early disease. Visible changes to bone, such as erosion or fusion, can take years to develop. By the time they show clearly on a plain X-ray, the condition may have been there for a long time.

Third, no single blood test confirms AS. The HLA-B27 gene marker is found in many people with the condition. But it is also present in a large share of the general population who never develop AS. Inflammatory markers such as CRP or ESR may be raised, but they are not specific.

A broader medical term, axial spondyloarthritis, now covers the full range. This includes people who have inflammation visible on MRI but not yet on X-ray (sometimes called non-radiographic axial spondyloarthritis). It also includes people with clear X-ray changes (the classic AS picture). This newer term helps catch the condition earlier, but many people still slip through the gaps.

What is ankylosing spondylitis, and why does diagnosis take so long? ScanAlign clinic illustration

What causes ankylosing spondylitis?

AS is an autoimmune condition. The immune system attacks healthy tissue in the joints and ligaments of the spine by mistake, causing inflammation. Over time, new bone can form in these inflamed areas. This slowly fuses sections of the spine together.

Genetics (HLA-B27) There is a strong genetic link. Carrying the HLA-B27 gene increases the risk, but most carriers never develop AS.
Immune response The immune system drives chronic inflammation. It targets the joints where ligaments and tendons attach to bone.
Environmental triggers Gut bacteria and infections may play a role in triggering the condition in people who are genetically prone to it.

The exact cause is still not fully understood. What is clear is that AS is not caused by poor posture, heavy lifting or anything you have done wrong. It is a medical condition, not a lifestyle problem.


How does ankylosing spondylitis change your posture over time?

Over the years, AS can slowly change the natural curves of your spine. Inflammation at the edges of the vertebrae triggers new bone growth. This new bone can bridge the gaps between vertebrae and slowly fuse them together. In advanced cases, this is sometimes called a "bamboo spine" because of how it looks on X-ray.

As sections of the spine fuse, normal flexibility is lost. The thoracic spine (upper back) may develop a bigger forward curve, which pulls your head and shoulders forward. Your lower back may lose its natural inward curve, a change related to flatback syndrome. These shifts affect your overall sagittal balance, which is the way your body lines up from head to feet when seen from the side.

Your body is a connected chain. When one section of the spine stiffens or changes shape, other areas have to make up for it. Your hips, knees and ankles may change position to keep you balanced. This is why people with AS sometimes get pain in joints well away from the spine itself.

What is ankylosing spondylitis, and why does diagnosis take so long? ScanAlign clinic illustration

Understanding these posture changes is important for planning any future treatment. A full spine X-ray taken while you stand shows these alignment shifts as your body actually experiences them, under gravity and load.


How does standing imaging help with ankylosing spondylitis?

Standing whole-body imaging captures your skeleton from head to feet in one weight-bearing exposure. This matters for AS. The posture changes the condition causes only show their true extent when you are upright. These include the forward lean, the bending at the hips and knees to compensate, and the loss of the spine's natural curves.

When you lie down for a conventional scan, gravity is removed. Your muscles relax. The spine may flatten or straighten in ways that hide how far your alignment has shifted. A standing image shows your body as it actually works through the day.

ScanAlign standing EOS imaging uses about 90% less radiation than a standard X-ray, around ten times less. This is particularly relevant if you need repeated imaging over time to monitor changes. The full-length standing view gives your rheumatologist or surgeon a clear picture of overall alignment, not just one region on its own.

Wondering whether a standing alignment scan could help your specialist understand your AS better? We offer a free video consultation to talk it through before you plan a trip to London.

Book a free video consultation

It is worth being clear: imaging alone does not diagnose AS. Diagnosis is a clinical decision made by a rheumatologist. It is based on your symptoms, blood tests, examination and imaging together. What standing imaging adds is a detailed, measurable view of how your posture and alignment have been affected. This helps guide the next steps in your care. You can read more on our back pain clinic page.


When is MRI the better choice?

EOS shows bones, joints and alignment clearly. For finding early sacroiliac inflammation, disc problems, nerve compression or soft-tissue changes, MRI is usually the better tool. In suspected early AS, MRI of the sacroiliac joints is often the most sensitive way to spot inflammation before bone changes appear on X-ray. Your rheumatologist will guide which imaging you need.


When should you seek urgent medical attention?

If you have sudden numbness or weakness in your legs, loss of bladder or bowel control, or a severe worsening of symptoms, do not wait for an imaging appointment. Contact your doctor, call your local emergency number, or go to the nearest emergency department. These symptoms need urgent assessment.

When symptoms are not urgent, it is worth getting a detailed diagnosis before you start a treatment or change the one you are on. Knowing whether the cause sits in the pelvis, the legs or the spine changes what will actually help.


Frequently asked questions about ankylosing spondylitis

Ankylosing spondylitis is a type of arthritis that causes inflammation in the spine and sacroiliac joints. Over time, it can lead to stiffness and, in some cases, sections of the spine fusing together. It is a long-term condition, not a short-term injury.

Inflammatory back pain typically starts slowly before the age of 40. It gets better with exercise but not with rest. It causes marked morning stiffness lasting 30 minutes or more, and it may wake you in the second half of the night. If this pattern sounds familiar, it is worth raising with your doctor.

Axial spondyloarthritis is the umbrella term. It covers both AS (where changes are visible on X-ray) and non-radiographic axial spondyloarthritis (where inflammation is present but X-ray changes have not yet developed). Both are the same underlying disease process.

HLA-B27 is a gene marker found in many people with AS. Testing positive means you carry the gene. It does not mean you have AS or will develop it. Many HLA-B27 positive people never get the condition. It is one piece of the diagnostic puzzle, not the whole answer.

No. Diagnosis is a clinical decision made by a rheumatologist. An EOS scan can show the structural and alignment changes that AS causes, such as spinal fusion and posture shifts. This helps inform treatment planning. But it does not replace the blood tests, clinical examination and specialist assessment needed for diagnosis.

When you lie down, gravity is removed and your muscles relax. This can hide how far your posture has shifted. A standing scan captures your skeleton under load, the way you actually stand and move, so alignment changes are seen as they truly are.

EOS uses about 90% less radiation than a standard X-ray, around ten times less. This lower dose is especially relevant for conditions like AS, where imaging may be repeated over time to monitor changes.

No. You can refer yourself. We offer a free video consultation first to make sure a standing alignment scan is right for your situation. If a different type of imaging would be more useful, we will tell you.

We are a private, self-pay clinic. The price for patients travelling from abroad is confirmed during your free video consultation.

Start with your doctor. Describe the pattern of your pain clearly: when it is worst, what helps and how long it has lasted. Ask about inflammatory markers and an HLA-B27 test. If your doctor suspects AS, they should refer you to a rheumatologist. A standing alignment scan can be useful alongside that process, but it does not replace an assessment by a rheumatologist.


See how your spine is really aligned

A standing whole-body scan shows posture and alignment changes that lying-down imaging can miss. Start with a free video consultation from home to find out if it is right for you.

Book a free video consultation

Sources

  1. National Axial Spondyloarthritis Society (NASS). "About Axial SpA (AS)." nass.co.uk
  2. Sieper J, Poddubnyy D. "Axial spondyloarthritis." The Lancet. 2017;390(10089):73-84.
  3. National Institute for Health and Care Excellence (NICE). "Spondyloarthritis in over 16s: diagnosis and management." NICE guideline NG65, 2017.

Written by Abbas Dhami (Specialist Diagnostic Radiographer)

This page is general information and not a diagnosis.

ScanAlign is the trading name of CoreMed Solutions Ltd and operates under The Harley Street Hospital's CQC licence.