Do I have Alzheimer’s? My journey with a disease that is complex to diagnose

By Michael Ellenbogen, Special to The Washington Post

Twenty years ago, at age 39, I began having memory and cognitive problems. My primary-care doctor and my neurologists said I was stressed and depressed. I also was diagnosed with mild cognitive impairment, or MCI. Ten years later, I received another diagnosis. Well, really two. One doctor said I had Alzheimer’s disease, and another thought it was semantic dementia.

Alzheimer’s is a devastating chronic neurodegenerative disease. It is a progressive mental deterioration that advances to affect bodily functions such as walking and swallowing, and always leads to death. Semantic dementia leads to losses of vocabulary, fluency of speech and meanings of familiar words. It also is progressive.

After another year of testing, physicians decided that I had Alzheimer’s.

While it was a relief to finally get a diagnosis, I realized that I had been given a death sentence. There is no prevention or cure for Alzheimer’s, and no survivors. Overwhelmed, I decided to help the search for a cure by advocating for Alzheimer’s and dementia.

I got involved with clinical trials and advocacy. My huge network on LinkedIn allowed me to connect with advocates and information. It gave me access to many tests, including gene tests, free. Two contacts, both health-care professionals, even read my medical records and scans and gave me their opinions.

Alzheimer’s is a complex disease to diagnose. The science is just not there yet. Sixty to 80 percent of dementia cases are said to be due to Alzheimer’s. But postmortem tests of elderly patients have found that dementia has several causes. “Up to one-third are primarily attributable to pathologies” other than [Alzheimer’s disease], primarily cerebrovascular disease and synucleinopathy,” said one study. The latter is a neurodegenerative disease with three types, one of which is Parkinson’s.

Source link