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How Do Doctors Diagnose Ankylosing Spondylitis: What to Expect at the Rheumatologist
The delay in diagnosis could be very real for most patients suffering with axial spondyloarthritis (axSpA).
Below you will find our top tips on what happens and how it happens when you visit your Rheumatologist.
You should see the right doctor if you suspect you have inflammatory lower back pain and other AxSpA symtoms.
Your AxSPa symptoms can start very gradually/insidiously and is often ignored or mistaken for other problems, and because you could feel the onset of these symptoms from your late teenager years to middle thirties, it could take a long time to reach the correct diagnosis.
According to feedback form our AxSpa forum, the delay in diagnosis in South Africa could be between 7-9 years.
Moving from pillar to post from a GP to physiotherapists, chiropractors and orthopaedic surgeon is quite common
Rheumatologists specialise in musculoskeletal disease and systemic autoimmune conditions that can affect your joints, muscles and bones. These are the specialists who can assist with getting the correct diagnosis and treatment plan. Ask your GP, local clinic doctor or physician to consider referring you to a rheumatologist. Make sure you are open to talk about all of you symptoms to make your GP understand it is not just back pain, but is inflammatory and you need more help.
Your GP may ask you the following questions:
– It will be normal for your GP to ask you the following questions:
– Did you start having symptoms before age 40?
– Have you had symptoms for three months or longer?
– Are your symptoms worse in the morning or during periods of inactivity
You should make sure that you share your medical details with your GP, and handy information you could provide would be:
- A family history of relatives with axSpA or axSpA-like back pain
- Psoriasis, inflammatory bowel disease and uveitis could be other inflammatory conditions that you want to mention
- Other signs of chronic fatigue
- AxSpA commonly affects the lower back and sacroiliac joints, but could cause pain in your mid and lower back, shoulders and also pains in your ribcage, feet and ankles. These may be an indicator that your back pain is not just mechanical.
If your doctor does not agree to refer you to a rheumatologist, consider asking your doctor about the reasons why he/she thinks you do not have axSpA
Your First Visit to the Rheumatologist
Analysing the results of various factors could lead to a diagnosis, and this may require some tests
- Patient and family history
- Physical examination
- Investigations including blood tests and Xray’s and possible MRI
Your doctor will look for evidence if inflammatory back pain and will assess your sacroiliac (SI ) joints.
Patient and Family History
A careful assessment of whether your back pain is mechanical or inflammatory will be the first port of call for your rheumatologist.. They’ll be on the lookout for these symptoms:
- Lower back and hip pain
- Morning stiffness that lasts at least 30 minutes
- Symptoms that improve with moderate physical activity
- Stiffness and pain that wakes you in the second half of the night or very early in the morning (this typically does not occur with mechanical back pain)
The rheumatologist will try and find other sites of inflammation other than areas mentioned above. It is quite common to have inflammation in the areas where your ligaments and tendons connect to the bone. This could be pain at your feet, your heels and the bottom of your feet, ribcage, elbows, knees and around the hips.
You could be asked if you have been diagnosed with uveitis, redness of your eyes or pain at the sight of light.
Make sure you try and keep a diary of the following, before you see your doctor:
- When was the initial onset of symptoms
- What can you do that helps ease the symptoms
- Any medical procedures you may have had previously
- Current medication list/response to previous medications including non-steroidal anti-inflammatory drugs (NSAIDs).
- Reach into your family history
Your doctor will be looking for signs of inflammation, tenderness, and limited range of motion in your spine and other joints. They may conduct a variety of in-office tests, such as:
- Ask you to bend forward (trying to touch your toes without bending your knees) to assess the flexibility of your lower back, carrying out some measurements on your back. This is called the Schober’s test.
- Have you stand with your back flat against a wall to do a couple of tests that measure the flexibility of different parts of your spine and neck.
- Measure how far your chest can expand when you inhale and exhale maximally (AS can compromise your ability to do this fully).
- Ask you to bend forward with your knees straight to touch your toes. He will then measure the distance between your middle finger and the floor. This is called a fingertip to floor distance.
Your doctor may physically feel for tenderness in certain joints and places around your body, including the SI joints by your pelvis, your Achilles tendon at your heel, and your knees, hips, shoulders and elbows. He will also do certain manoeuvres on our pelvis in an attempt to elicit pain in your sacroiliac joints.
X-rays and MRIs are the two most common imaging tests used to help diagnose ankylosing spondylitis
What is the difference between a X-ray and a MRI scan?
An X-ray allows your doctor to see your bones and joints to look for signs of fusion or damage. However, you can have AS for years before damage would show up on an X-ray, so a normal x-ray doesn’t necessarily mean you don’t have axSpA.
An MRI sends radio waves through your body to produce images of your body’s tissues. It’s much better at seeing the soft tissues inside the bone and around the joints than X-ray, so it can pick up inflammation before actual damage to the bones has occurred.
Your rheumatologist may order a number of different blood tests to help paint a more complete picture of your AS risk factors.
- HLA-B27 genetic marker: This genetic marker is very common among white patients of European descent with AS; about 90 percent will be HLA-B27 positive. However, the presence of HLA-B27 is much lower among people with AS of other ethnic backgrounds. A positive HLA-B27 status isn’t required to diagnose AS. But a positive test result could help make it easier to get further testing, such as an MRI if your X-rays are normal. Some doctors think everyone with significant AS symptoms should get this blood test. Please remember that not everyone who has positive tests has axSpa- many healthy people without axSpA have this generic marker. Only 1 in 5 individuals with this gene develop axSpA.
- Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) are blood tests that can demonstrate levels of systemic inflammation in the body. There are elevated in some, but not all, AS patients. While they are part of diagnosing AS, they’re also important markers to track how well you’re responding to treatment after diagnosis (if initially raised).
- Rheumatoid factor (associated with RA) or antinuclear antibodies (associated with lupus) may be ordered to help exclude out other conditions.