Missed Chances
Last updated: November 2022
Just read about the Glandular fever virus connection, I had it at 14, that's 50 years ago.
Dismissed by doctors...
It's incredible isn't it, I directly asked my Rheumatologist (who also now claims to be a Lupus expert, AFTER my stroke last June) if my experience having glandular fever (Epstein-Barr Virus) when I was a teenager was a trigger for Lupus? "No connection," he said.
Living with Hughes Syndrome
He probably went away and wrote a paper on his newfound subject. I knew Epstein-Barr Virus had a connection and am so relieved that others have proven that is the case. You may have read that 'Hughes syndrome' is connected to Lupus. SLE caused my stroke last June, so please be aware of the possibilities. Get checked for Hughes. It's a blood clotter termed "sticky blood." Lupus is dangerous and with Hughes it could be a killer.
The cost of misdiagnosis
Don't get overlooked. They misdiagnosed/missed my Lupus 25 years ago and then only found Hughes post-stroke.
Just so people know, there is no limit to who it can get it. I am a 64-year-old UK male, who after being cleared on an MRI scan, was admitted to the hospital just 2 months later with a stroke. Turns out several MRI's, Cat scans and ECG's showed a history of strokes shown as scars on the brain.
Some people missed out big time, don't let them miss you. Take care, all.
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