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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.
June 10
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A MyLupusTeam Member

Thank you, im starting to think being diagnosed with ME/CFS at the age of 9 was wrong

June 10
A MyLupusTeam Member

my health crisis in 2020 was a six month turn around. I was diagnosed at the age of 43, but through further research of my medical history I've had since 16 apparently

June 10
MyLupusTeam

Getting a lupus diagnosis can feel like a waiting game — and unfortunately, it often is. On average, it takes around six years from when symptoms first appear to get a confirmed diagnosis. Many people receive at least one misdiagnosis along the way, so it's really common to feel frustrated during this process.

A MyLupusTeam Show Full Answer

Getting a lupus diagnosis can feel like a waiting game — and unfortunately, it often is. On average, it takes around six years from when symptoms first appear to get a confirmed diagnosis. Many people receive at least one misdiagnosis along the way, so it's really common to feel frustrated during this process.

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." You are definitely not alone in this journey. There's no single test that confirms lupus, which is why blood results are so important. Doctors typically look at a combination of results, including:

- ANA test — checks for antibodies linked to lupus
- Complete blood count (CBC) — looks at red/white blood cells and platelets
- Complement levels (C3 & C4) — low levels can signal inflammation
- Inflammatory markers — like ESR and CRP
- Urine tests — to check for kidney involvement

Waiting for blood results is a key part of the process, so your GP is on the right track by investigating further. While waiting, it's worth keeping a symptom diary to track what you're experiencing day to day. This can be really helpful when speaking with your doctor, especially if things feel overwhelming in appointments.

It's also important not to stop or change any medications without speaking to your GP first — some need to be carefully managed to avoid side effects.

June 10

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