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A MyLupusTeam Member asked a question πŸ’­
London, UK
July 25
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A MyLupusTeam Member

I believe the doctors go by symptoms and then extensive blood work. It took me years to get a diagnosis; I didn't know enough to ask to be tested either, or I would have asked years ago.

July 25
MyLupusTeam

Diagnosing lupus can be a long journey β€” on average it takes about six years from when symptoms first appear to get a confirmed diagnosis. There's no single test that can confirm lupus, so doctors piece together a picture using a combination of symptoms, lab results, and imaging.

A positive ANA (antinuclear antibody) test is Show Full Answer

Diagnosing lupus can be a long journey β€” on average it takes about six years from when symptoms first appear to get a confirmed diagnosis. There's no single test that can confirm lupus, so doctors piece together a picture using a combination of symptoms, lab results, and imaging.

A positive ANA (antinuclear antibody) test is a required first step. If that comes back negative, lupus can typically be ruled out. If it's positive, your doctor will look for additional symptoms and test results, each assigned a point value. A score of 10 or more points can lead to a lupus diagnosis.

Here's a breakdown of what the diagnostic process usually involves:

- Blood tests β€” To check immune function, look for specific antibodies (like anti-dsDNA or anti-Smith), and measure inflammation markers
- Urine tests β€” To check for protein or red blood cells, which can signal kidney involvement
- ANA test β€” A key marker that must be positive to even be considered for a diagnosis
- Skin or kidney biopsy β€” To look for tissue damage
- Imaging tests β€” Such as chest X-rays or ultrasounds to check for inflammation around the heart or lungs
- Neurological exam β€” If symptoms like brain fog, headaches, or seizures are present Symptoms are grouped by the organ or body system they affect, and you generally need at least one symptom from certain categories to qualify for a diagnosis. Common symptoms that might prompt a doctor to test for lupus include:

- Butterfly-shaped facial rash
- Joint pain or swelling
- Hair loss
- Mouth or nose sores
- Extreme fatigue
- Unusual bruising or bleeding
- Blood in urine or foamy urine
- Raynaud's phenomenon (color changes in fingers when cold)

It's worth noting that some people have lupus without showing many of these signs, which is part of what makes it so tricky to diagnose. Staying in close communication with your doctor and reporting any new or changing symptoms β€” even ones that seem minor β€” can really help speed things along.

July 25

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