Lupus Diagnosis: Connecting the Dots
Known as "The Great Imitator," getting a lupus diagnosis can be frustrating. It involves reviewing laboratory tests, symptoms, and family history.
When you're not feeling well, you want to know what the cause is. Unfortunately, it is not uncommon for the lupus diasgnosis process to take months or years as doctors evaluate the web of symptoms that are associated with this complex disease.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.LupusCorner conducted a poll of 119 Lupus Warriors about the lupus diagnosis process. 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 that there are complexities with changing clinicians. Each new doctor will need to conduct a thorough review of your current and past symptoms. Medical records are still not always quickly or effectively shared between hospital systems. And, it may result in redundant laboratory tests which can be costly.
Laboratory tests & lupus diagnosis
Lab tests help clinicians better understand how the body is functioning at the system, organ, and cellular levels. Throughout the course of care, these tests are used to monitor disease progression, too. However, there is not currently a single laboratory test to determine if a person has lupus.
Blood tests
Antinuclear antibody test (ANA)
Antinuclear antibodies are parts of the immune system that attack the body instead of foreign invaders
A positive ANA is the first requirement for the new lupus diagnosis guidelines created by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR)
Measures key components from the blood including:
red blood cells which carry oxygen through the body
white blood cells which are part of the immune system and attack invaders
hemoglobin, the oxygen-carrying protein in red blood cells
hematocrit, the percentage of red blood cells in the blood
platelets which contribute to blood clotting
Prothrombin time (PT) test
Coagulation tests measure how long it takes blood to clot
Measure proteins in the blood that make up the complement system in the immune system
Common Symptoms & Lupus Diagnosis
Lupus is the cause of inflammation and swelling throughout the body. It can result in a number of symptoms, many of which can come and go over time. Because of this, it's important to keep track of symptoms using a journal or a digital tool.LupusCorner app, available on both iOS and on Android, includes an easy symptom tracker (along with a medication tracker and a community forum).Symptoms to monitor include:
When tracking symptoms, it's not only important to know which symptoms you are experiencing. It is also necessary to record when symptoms start and stop, the severity of a given symptom, and the frequency.Beyond tracking symptoms, clinicians will also look at family history because of the genetic component to lupus. Also, it's important to share illnesses other than lupus, particularly other autoimmune conditions including Crohn's disease, multiple sclerosis (MS), and rheumatoid arthritis (RA).
Getting Support During the Lupus Diagnosis Process
Your time with a rheumatologist is valuable. Here are some tips to make the most of it!
Take notes
It can help you remember what was said and jog your memory later
Ask questions
Don't be afraid to ask! If something is unclear or needs additional explanation, just ask. And this extends to after the visit as well - don't be afraid to call the clinic
Make a list of your medications & symptoms before getting there
Medication reconciliation is part of the steps of a visit. Don't waste time trying to remember
Bring a friend or family member
Having someone else in the room with you can ensure you get your questions answered during the visit and can help with visit follow ups