2/ After the attending took a perfunctory history, I saw an immunologist, a neurologist, and an ophthalmologist. They took a CT, an MRI, and various blood work. A day later they discharged me with a dx of mono and a minor sinus infection. I was given steroids for the latter.
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3/ Within weeks, the symptoms went away. Everyone was relieved especially since I had very loudly self-diagnosed myself with a pituitary tumor. …A year later the symptoms came back and worsened quickly. I was correctly diagnosed with a
#chordoma tumor pressing on the 6th nerve.Show this thread -
4/ Happily, my subsequent treatment was incredible. (Thanks
@columbianeuro and Jeffrey Bruce!) But, it could have been different. Medical intervention was delayed by a year due to a misdiagnosis. Most people wouldn't have been so lucky.Show this thread -
5/ Years later, I cobbled together all my medical records in case researchers wanted it. (Chordoma is a rare disease. Information is valuable.) I read the hastily taken patient history from that day.
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6/ Written (Actual): - Pack a day cigarette smoker (Didn't smoke) - Never drank alcohol (I was an 18 year old male) - BLURRY VISION (DOUBLE VISION)
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7/ The last one was an error that caused the whole team to miss the mark. The tumor was very visible on the original MRI. They didn't see it because they were looking in the wrong place. My internet-inspired dx was better than theirs. All because they didn't listen.
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Thank you for sharing your story!!
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Thanks for your reminder to colleagues that patients are people!
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Oh wow! I’m glad you bounced back after receiving the correct diagnosis. It can be very frustrating when you speak to a doctor but they aren’t prepared to listen. Thank you for sharing your experience!
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