Man Believes He Has Alzheimer's for 10 Years, Until Scan Shows Doctors Were Wrong
Michael Ellenbogen was a husband, father, and high-level manager who enjoyed boating in his free time. His roles as husband and father have not disappeared, but his career and hobbies along with his normally-functioning memory have.
Ellenbogen’s ability to successfully perform in his career, control the twin-engine of a boat, and even remember where his cars keys were began to fade around 39 years old.
He saw his primary-care physician and neurologists who believed his cognitive issues were because of depression and stress.
Mild cognitive impairment was the official diagnosis. But the next ten years did not feel mild considering the severity of his memory loss.
Finally, 10 years later at the age of 49, he was given a new diagnosis. Ellenbogen was told he had Alzheimer’s disease.
The diagnosis was both relieving and devastating. It was a relief to have a better understanding of what was happening to his body and mind.
It was devastating that his body and mind were suffering from a chronic neurodegenerative disease that would progressively get worse with no cure in sight.
Ellenbogen was struck by both the lack of government funding for Alzheimer’s disease and support he received from family and friends.
“When someone says they have cancer, those around them embrace that individual and feel sorry for them… When I tell someone I have Alzheimer’s, they first joke that they have it, too,” he told The Intelligence in 2016.
But Ellenbogen will no longer be subject to the insensitivity of such a ‘joke’ because he likely never actually had Alzheimer’s in the first place.
He believed he was living with the disease for 10 years before undergoing a diagnostic scan that changed everything.
Beta-amyloid neuritic plaque density is checked in the scan. Amyloid plaques are usually little to none in a person without Alzheimer’s.
The lack of amyloid plaques on Ellenbogen’s scan led to his shocking negative results. He told the Washington Post, “I also felt like a fraud because, for years, I had been in the public eye telling everyone I had Alzheimer’s.”
His amyloid scan was part of a trial so his Alzheimer’s diagnosis remains on his medical record. More significantly though, it does not remain as the driving force in his life responsible for his memory and cognitive problems, allowing him to move forward.
Semantic dementia or suspected non-Alzheimer’s pathophysiology seem to be more likely at this point for the 59-year-old.
Ellenbogen concluded his message to the Washington Post by saying, “The one thing we all should learn from my experience is to take advantage of all the tools we have access to so we can make the best decision possible.”
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