Diagnosis Disputes: What to do when one doctor says you ahve lupus and another says you don’t

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Diagnosis disputes can happen while you’re in the process of getting diagnosed or have been diagnosed for many years.

Lupus is a difficult disease to diagnose. The tests available provide indications for lupus; there is no single test for lupus. The average lupus diagnosis can take many years.

Sometimes a primary physician or an OBGYN will be able to diagnose lupus, however, Rheumatologists are the specialists that treat lupus. If you suspect you have lupus or if you were not diagnosed by a Rheumatologist, you will certainly want to find a rheumatologist to provide ongoing care or to definitely diagnose lupus.

The American College of Rheumatology (ACR) is a professional membership organization committed to improving the care of patients with rheumatic diseases. The ACR developed 11 criteria for lupus. In order to obtain a lupus diagnosis, patients must exhibit 4 of the 11 criteria:

Malar rash: butterfly-shaped rash across cheeks and nose
Discoid (skin) rash: raised red patches
Photosensitivity: skin rash as result of unusual reaction to sunlight
Mouth or nose ulcers: usually painless
Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
Neurologic disorder: seizures and/or psychosis
Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. A special note on the ANA test

It is possible to get a “borderline” diagnosis – in other words, a person can exhibit some signs of lupus but not yet have a lupus diagnosis.

Lupus is a disease of flares (active periods of the disease) and remissions (non-active periods of the disease) which can compound the problem of diagnosis.

At the LSI, we suggest patients who have diagnosis disputes to see a specialist. LSI refers patients to our Medical Advisory Board physicians (here) or the American College of Rheumatology website that lists rheumatologists by location.

We also suggest that when making your appointment you:
Check to make sure your insurance is accepted
Ask how many lupus patients the doctor sees
Ask if the doctor is involved in lupus research

If you have any questions about the doctors you have been referred to, you can always reach out to the LSI for support in finding a doctor that will help you.

LSI is here to support you, the Illinois Lupus Community. Don’t hesitate to contact us with any questions.

If you have any questions, please contact the Lupus Navigator at 312-648-6053 or email mary@lupusil.org.

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