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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
April 8, 2015
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Answer Summary

Members shared that inconclusive lupus test results are surprisingly common, with many experiencing diagnoses that evolved over years from... Read more

Members shared that inconclusive lupus test results are surprisingly common, with many experiencing diagnoses that evolved over years from undifferentiated connective tissue disease to mixed connective tissue disease to finally systemic lupus, often taking anywhere from four to fifteen years for a definitive diagnosis. Several members emphasized that lupus is notoriously difficult to diagnose because it mimics other conditions, test results can fluctuate between positive and negative even on the same medications, and doctors must rely on clinical symptoms alongside labs rather than test results alone. A recurring theme was the frustration of seronegative lupus making it harder to qualify for disability benefits and get proper treatment, coupled with encouragement to advocate for yourself, seek second opinions, do your own research, and persist through the diagnostic process without giving up.

A MyLupusTeam Member

I was told to quit my job as I needed more rest. I said, “No!”
I taught 40 years… they were tough years, but I made it!

May 21, 2022
A MyLupusTeam Member

I was first diagnosed with anemia then leukemia. After that fibromyalgia then rheumatism. After about five years of that then discoid lupus alopecia and cutaneous lupus before receiving systemic lupus diagnosis. Lots of blood draws and biopsies. Never fun. But still exceeding expectations. Went into remission long enough to join the Army. Was told I'd be dead by 36. Turning 40 this year. Dx of lupus is a process of elimination. Takes time and lots of tests. Hang in there.

February 16, 2022
A MyLupusTeam Member

I've heard of this happening because it can be hard to diagnose. Lupus is elusive and often called "The Great Masquerador " because it can mimic so many other illnesses. The test isn't the only indicator, your specific symptoms tell a story too. Maybe you should seek a second opinion. There are some with lupus that don't test positive, but do have it. Also, someone testing positive may not test positive at a later date. Read about the different ones on-line and see what your symptoms most closely resemble. Good luck.

June 30, 2017
A MyLupusTeam Member

Understand I went through the same when I was first diagnosed I try to do exercises not for my weight but for my joints it helps 🙏🏽

February 18
A MyLupusTeam Member

Just be patient, lupus mimics others diseases. I was first diagnosed with discoid lupus and last year I was diagnosed with SLE. Remember it takes about ten years for lupus to be fully diagnosed. In addition to your doctors, do your own research so both you and your doctors can work as a team. 💜

December 23, 2024

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