How can you navigate a confusing lupus diagnosis history?
It's frustrating and confusing when your diagnosis changes, especially after living with symptoms for years. Unfortunately, this experience is more common than you might think.
Lupus can be incredibly difficult to diagnose because there's no single test that confirms Show Full Answer
How can you navigate a confusing lupus diagnosis history?
It's frustrating and confusing when your diagnosis changes, especially after living with symptoms for years. Unfortunately, this experience is more common than you might think.
Lupus can be incredibly difficult to diagnose because there's no single test that confirms it. On average, it takes six years to receive a definitive diagnosis, and 63% of people ultimately diagnosed with lupus receive at least one misdiagnosis first.
A MyLupusTeam member shared: "I was always sick as a child. In my thirties, my doctor sent me to a specialist who determined I didn't have lupus. It was diagnosed when I was 58."
What you can do now:
* Keep detailed records of all your symptoms, when they started, and how they affect your daily life
* Ask your current rheumatologist to explain what criteria they're using to evaluate your condition
* Request copies of your old test results and current test results to compare
* Ask specifically what symptoms or test results would need to change for a lupus diagnosis
Your symptoms deserve attention and treatment regardless of whether they currently meet the full criteria for lupus. Work with your rheumatology team to find treatments that improve your quality of life, even if the diagnosis remains uncertain.
March 27
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