Maybe you’ve been living with symptoms for a while. Shuffling between episodes of temporary comfort and pain. You know something is amiss because you just don’t feel like you used to. You keep advocating for yourself until you arrive at the right doctor’s office to get the precise mix of labs and tests ordered to finally solve your unique healthcare puzzle.
Does it sound challenging? It is. Especially in the case of some autoimmune diseases, particularly lupus- a condition in which diagnosis can be both a relief and heartbreak at the same time.
Lupus can be a challenge to diagnose simply because its symptoms mimic many other diseases. Many people have lupus for a while before they find out they have it. A flare (disease activity) can occur and then you may have periods of remission (disease rest). Lupus flares can have a number of symptoms including but not limited to:
- Malar or discoid rash
- Chest pain
- Hair loss
- Sun or light sensitivity
- Mouth ulcers
- Unexplained fatigue
- Brain fog
- Eye changes
- Muscle and joint pain
Talking to your doctor about your symptoms can help lead to further testing. Although lupus is not diagnosed by a single test alone, it can be diagnosed based on a combination of your labs, symptoms, and medical history. Some lab tests which may be ordered by your doctor are
- Complete blood count which measures the levels of red blood cells, white blood cells, platelets and serum. An out of range result can indicate inflammation in the body.
- Antibody blood tests – Antibodies are part of the body’s natural defense system, the immune system. The body uses antibodies to attack and neutralize foreign substances like bacteria and viruses. In the case of autoimmune diseases, antibodies mistakenly recognize healthy and normal cells as foreign and attack them. The most common test used for lupus is called antinuclear antibodies test (ANA). This test is not exclusively sensitive for lupus but high numbers of Lupus patients test positive for it. Your rheumatology team can use a positive ANA, additional antibody level results, and other symptoms to appropriately diagnose you.
- Blood Clotting time – This measurement shows the rate at which your blood begins to clot. Abnormal blood clotting happens in people with lupus because this condition causes the body to produce excess amounts of antibodies. There are many different types of antibodies and each has a specific job. The increased number of antiphospholipid antibodies in particular make it more likely that you will develop blood clots compared to someone without them.
- Additional blood or urine tests may measure levels of proteins that are not antibodies. A change in the levels of these proteins can alert your doctor that there is inflammation somewhere in your body. These are especially important to test kidney function. If these numbers are not within appropriate range, this may be another clue for your doctor to investigate further.
- Tissue biopsy is a procedure involving removal of a small bit of tissue that is then examined under a microscope. The skin and kidney are the most common sites biopsied in someone who may have lupus. The results of the biopsy can show the amount of inflammation and any damage being done to the tissue. The observed markers in the biopsy will guide not only the diagnosis but treatment paths as well.
Due to the many unique symptoms of lupus and the difficulty in diagnosis, there is an ongoing effort to discover novel diagnostic tools for it. Read more about new research methods analyzing detection, classification, prognosis and diagnosis of lupus here. The authors of this particular paper concluded that at this time these new methods do not appear to offer benefit in diagnosing lupus as compared to currently used methods. More research and understanding is required.
By Nadia Bhatti