Known as “The Great Imitator” — Lupus can be a challenge to diagnose as many symptoms are confused with other health conditions.
Learn about the difficulties in getting a lupus diagnosis and tips for speaking with your doctor about your symptoms.
It is not uncommon for the process to take months or years as doctors evaluate the web of symptoms that are associated with this complex disease. Providing clinicians with a complete and accurate medical history is essential to getting a proper diagnosis. With lupus, symptoms may seem to appear and fade over time. Keeping a hand-written symptom journal or using digital tools, such as Karate Health, are excellent strategies. It will help you maximize time during your clinic visits AND eliminate the possibility that you forget to report symptoms.
Click here to learn more about how to start tracking symptoms
Getting a diagnosis can be overwhelming.
You may feel unheard. It can be exhausting.
Any physician can diagnose you with lupus including your primary care provider (PCP), hospitalists, or pediatricians. However, rheumatologists are experts in diagnosing and treating autoimmune diseases such as lupus. Even with that expertise, a diagnosis is not guaranteed as many symptoms are not specific to lupus, and they may develop or evolve over time.
We conducted a poll of 119 people diagnosed with lupus who shared their experiences with getting diagnosed. More than 1/3 reported seeing 6 or more doctors before getting a diagnosis. Only 14% reported getting a diagnosis from their original doctor.
While this may suggest that seeing more doctors will hasten your diagnosis, keep in mind the complexities involved in reaching a lupus diagnosis. Each new doctor will need to conduct a thorough review of your current and past symptoms. Because medical records are still not always quickly or effectively shared between hospital systems, this further highlights the need for you to habitually track your symptoms.
In addition to your medical history, clinicians will review your current symptoms, your laboratory test results, and the medical history of close family members such as your parents, grandparents, siblings, aunts, and uncles. Despite all of this information, it can still be difficult to determine a diagnosis. No single laboratory test determines if a person has lupus. Test results may be inconsistent over time – being positive at one time and negative at another.
The American College of Rheumatology has developed a list of eleven symptoms for lupus. If your doctor determines that you have at least four of those symptoms, and there is no other reason why those symptoms would be present, then you may have lupus.
Read more about the ACR symptoms by exploring the Symptoms category here