Why is Lupus so difficult to diagnose?

Lupus is a chronic and complex disease that can throw up many different and often bizarre symptoms – symptoms that can vary greatly from person to person and often randomly come and go over weeks and months.

It’s known as ‘the great imitator’ as many of these symptoms mirror those of other, far more common conditions.  This makes the little bugger that much more difficult to diagnose.  To make things trickier still, there is no single laboratory test that can determine if a person has Lupus, and a test result may be positive one time and negative another time.

It’s safe to say that this certainly isn’t the most helpful or cooperative disease to have!

Before you can be branded with that great, big, ugly, Lupus stick, the doctors will have to look at your current symptoms (there are plenty of these for your body to pick and choose from), your blood test results, your full medical history and the medical history of your close family members.

The blood tests are used to assess your general state of health, check if you have an infection, see how well certain organs, such as the liver and kidneys, are working and screen for certain genetic conditions.

The first test off the starting block is the erythrocyte sedimentation rate (ESR) test, to determine whether there is any inflammation in your body.  This is quite a useful little indicator as Lupus has a habit of making various joints and organs swollen and inflamed.

Next up is the anti-nuclear antibody test (referred to as the ANA test)  the test you will probably hear about the most.  This test is to check whether there is a certain type of antibody cell in your blood, known as the anti-nuclear antibody.  Approximately 95% of people with SLE have this antibody, but it’s also possible to have the anti-nuclear antibody without having SLE.  In other words, this test needs even more tests to back it up. Useful!

Following in hot pursuit is the anti-DNA test, which also checks for a certain type of antibody in your blood, known as the anti-DNA antibody.  Sadly having this antibody means chances are you do indeed have SLE.  Of course, the level of anti-DNA antibodies increases if you’re having a flare-up, so that can be pretty changeable too. Oh yes, and the antibody is only found in around 70% of people with the condition. Even more useful still.

Finally, there’s the complement level test.  Complement is a chemical in the blood that forms part of your immune system. The level of this chemical may be tested to check how active your SLE is. The levels decrease when your SLR  is more active.

All test results will probably be sent directly to your GP and your rheumatologist to mull over.  In all these years no one has ever bothered to tell me what the results have been, possibly because I’m only the patient on a need-to-know basis,  more likely  because I wouldn’t have a clue what any of them actually mean.

I’m just a humble little patient, not a doctor, so to read more in-depth info about the different laboratory tests required, you might want to have a nosey here.

Of course, the tests don’t stop once you’ve been diagnosed.  Once you have SLE it is possible to develop other conditions, such as kidney problems, so regular monitoring will be necessary to check for any changes or complications.  Certain medications also require regular testing to make sure everything still working as it should do.

You may also need to have scans, such as an X-ray, ultrasound scan, magnetic resonance imaging (MRI) scan or a computerised tomography (CT) scan to check whether SLE is affecting your internal organs.

All-in-all it can often take years for a Lupus diagnosis to be made.  To hurry up the whole painful ordeal it certainly helps to find yourself a sympathetic, empathetic and medically clued-up doctor who will take your symptoms seriously, and then move heaven and earth to get you treated.

Happy hunting and good luck!

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