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Anigma

Updated 11mo ago

Questioning my Lupus Diagnosis after Years

Has anyone been diagnosed with lupus for years to have doctor say you may not have it?

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Rowboat

2y

Yes! I had my ANA tested back in high school (2015) and had been experiencing symptoms since 2010 and it came back normal. But since about 2017 I’ve developed the butterfly rash (unknowingly) and saw a dermatologist for my horrible acne and she diagnosed me with lupus. I told her I was already tested and it was normal and she said if I wasn’t currently having a flair, it wouldn’t show up. And now I’ll be seeing a rheumatologist later this month.
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Rowboat

2y

Wait I kinda misunderstood your question. I wasn’t previously diagnosed but that’s my story with doctors saying I don’t have it.
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Frapples

2y

Not for lupus specifically. Mine was RA. I was told I probably had RA, see a pain manager and deal with it. 4yrs later and actual testing by a specialist, no RA 🤷‍♂️ He told me it's common with inflammation based disorders because of all the symptom overlap. Blood work doesn't usually pinpoint the exact problem, they need symptoms too. So it is wishy washy territory with new studies being done every year.
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carolanne

2y

You can have false negatives and false positives lupus pretending it is so many different things doctors take into account symptoms and blood work. The one doctor after years after being told yes. I would question that. I was send to one doctor after being diagnosed and came to the door of the exam room didn't introduce himself look at me and said you don't have lupus I know what lupus patients look like. I got up told him if he said another word to me I would stick him in one of the cabinets Go to a doctor you are comfortable with.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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