Diagnosing Lupus

Diagnosis, General Information, Lupus Tests, Main Blog

Diagnosing Lupus and Lupus Tests

Diagnosing Lupus

Lupus is an incredibly complex autoimmune disease and diagnosing lupus can take a lot of time and many doctor visits. Patients will often get diagnosed with other “overlap” diseases such as RA, Sjogren’s Syndrome, Scleroderma, Fibromyalgia or Raynaud’s Phenomenon even before a diagnosis of lupus is made. This can be very frustrating for both the physician and the patient. Understanding the process of getting a lupus diagnosis is one of the most common questions we get here at Molly’s Fund, as well as a main topic in the discussions on our Facebook page and our other social media platforms. The goal of this blog is to give a clear understanding of the diagnosis process and provide the tools needed to go back to your doctor (or a new doctor) armed with the information you need.
Do you think you may have lupus? If you have shown several of the signs for lupus, you and your physician may now take the next step in determining if it is lupus or another auto-immune disease.  In order to make such a diagnosis, the individual must first show clinical evidence of a multi-symptom disease (i.e., the individual has shown abnormalities in several different organ systems). See image below regarding the criteria for a lupus diagnosis as set forth by the American College of Rheumatology
To learn more about the symptoms that can be specific to lupus, please refer to our blog; Lupus Symptoms and Signs. There you can find an excellent graphic showing the body and where lupus can present itself along with other helpful information on that topic.

Very Important Information

Before receiving any test, it is important to understand that no one test alone can determine a lupus diagnosis.  A positive test result does not necessarily mean that you have lupus, nor does a negative test result mean that you do not have lupus. Individual test results can also vary from one visit to another, which can be very confusing.  A doctor will take into consideration a combination of factors as well as the test results when diagnosing lupus, and because of this, we encourage you inquire about the ANA and DNA testing, which doctors are often reluctant to give.  These two tests together can create a clearer picture of whether the diagnosis could be lupus.  Again, we must remind you that just because you test negative today, it does not mean that you won’t test positive tomorrow. If you are not satisfied with the results or are uncomfortable with your physician for any reason, please seek a second opinion.  We always advise you to be your best advocate! 

Preparing for a Doctor Visit

diagnosing lupusBecause lupus is so complicated and can affect people so differently, it is important to see a doctor who specialized in the treatment of lupus, for most lupus patients, a rheumatologist will be their primary physician.
A rheumatologist diagnoses (detects), treats and medically manages patients with arthritis and other complex rheumatic diseases. These health problems affect the joints, muscles, bones and sometimes other internal organs (e.g., kidneys, lungs, blood vessels, brain). Try our referral network to help you find one in your area.
If you have not yet been to a physician, here are some important tips when preparing for your first appointment:

How does a lupus diagnosis get confirmed?

Because lupus can mimic several other illnesses, a diagnosis will usually take into consideration several factors:

The American College of Rheumatology has set forth 11 Criteria for classifying a lupus diagnosis. See image below for the list. The patient must present with at least four (4) of the criteria to receive a lupus diagnosis.

*This is a great image to print out and take with you to the doctor!Diagnosing Lupus

Blood Tests

If the physician has suspicions that you could be suffering from lupus, or another auto-immune disease, he or she will most likely order several tests. Some of these tests may include the following list:

Imaging Tests

If your physician has suspicions that your heart or lungs have been affected by lupus, he or she may advise for specific imaging tests in diagnosing lupus:


It is very common for lupus to affect the kidneys negatively in many ways.  You can read about this in our blog on lupus nephritis as well. Treatments will vary based on the type of damage that occurs.  In some cases, testing a small sample of the kidney tissue will help determine the best treatment and course of action to be taken. A needle or small incision is usually used to obtain this sample.

Some Questions for you to Ask Your Caregiver After a Lupus Diagnosis

Once a lupus diagnosis has been confirmed by your physician, you will have many questions.  Here is a quick list of questions to help you get started in getting the necessary information in order to have a better understanding of your specific symptoms and move forward towards the most successful course of treatment and/or management of the disease. It may also be helpful to have an advocate along with you like a friend or loved one to help you remember important details:Doctor and patient.

You Are Not Alone 

18--Chat--Shoshana-Kelli-Hands-together-Services-Diagnosing-lupus-webIt can be very scary to receive a lupus diagnosis, have your life disrupted and cause you to become uncertain about the future. The good news is that strides are continually being made in the discovery of better diagnostic tools and more effective medications. With the combination of correct treatment, medication, and living a healthy lifestyle, many people with lupus can look forward to a leading a long and productive life.  We encourage you to reach out to friends, family, and join support groups to share your feelings and fears.  We would like to remind you to be your best advocate, take great notes, and bring a support person with you to each visit to help remind you of the doctor’s advice and information.



We are always here for you at Molly’s Fund, please join our online community and share your story or ask us any questions you may have!

You have just read Diagnosing Lupus. You may now also wish to read the following blogs:

Lupus Flares: Recognizing one, triggers, and prevention

Lupus Symptoms and Signs

Coping with Lupus: How does lupus affect your state of mind and body?

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Article by : Karrie Sundbom

Karrie is the Digital Marketing Manager at Molly's Fund and responsible for innovating content for all of Molly's Funds online communications, creating memes and graphics, writing the MFFL Newsletter and main lupus blogs, as well as developing and managing the content for all of our social media platforms. Connect with Karrie on LinkedIn and Google+ .
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