Tuesday, April 11, 2023

Answering my biggest question...

What is my biggest question? It's, "Do I really have Alzheimer's disease, or is there some other explanation for my roller-coaster experience?"

Certainly the first neurologist who examined me in 2015 was confident it was Alzheimer's disease.  When I was referred to the highly reputable Brain Wellness Center at the University of Washington's Harborview Medical Center, they established that I was cognitively impaired, and my MRIs were consistent with Alzheimer's disease.  In fact, my MRI results in 2017 were consistent with someone in memory care.  And my condition responded to lifestyle changes consistent with the widely respected FINGER study.  

As we discussed in Beating the Dementia Monster, the final diagnosis of Alzheimer's disease is in the autopsy.  Not being in a rush to get to that step, my diagnosis carried an element of doubt.  Something was causing my cognitive decline, but was it Alzheimer's disease?  Or maybe something else, like normal pressure hydrocephalus?

Since 2015, the technology for diagnosing Alzheimer's disease in a living patient has advanced quite a bit.  Most notably, checking for beta amyloid polypeptides and certain species of tau protein in cerebrospinal fluid has become an accepted tool, as have PET scans for both beta amyloid and tau.  We anticipate that reliable blood tests may become available in the next year or so.

While it's still cutting edge, I asked my local neurologist about a test of my cerebrospinal fluid.  She thought this was a good idea, but she referred me to have it done at Harborview rather than a local facility.  That's what I decided to do.

And that was today.  

We came to Seattle and made our way to Harborview.  There I met a new (to me) neurologist recommended by my neurologist back home.  He administered a lumbar puncture, taking 20 ml of spinal fluid (quite painlessly).  He said we would likely have results next week.  The sample was to be sent overnight to Mayo Clinic for analysis to be analyzed for both beta amyloid and tau.  The neurologist cautioned that some results are strongly confirmatory (either positive or negative), but they can also be ambiguous.  After the procedure, we returned to our son's apartment, and we will return home tomorrow to await the results.

While waiting for the results, the neurologist suggested some reading.  He recommended the Mayo Clinic web site where they discuss the test and its interpretation.  So I looked it up and found it very interesting.  Maybe you will too.  Click here.

I will update you when I have results.

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