my story revisited #62-best tests

 MY STORY REVISITED #62-BEST TESTS

this was the status of the best tests to have in 2012 to get your diagnosis of alzheimers disease
it hasnt changed much since then 
they have recently approved the tau protein brain scan to add to the regimen but its mostly only used in research studies
a quick review is that amyloid usually appears first then later tau appears as tau tangles
the amyvid pet scan can show amyloid deposits
the tau pet scan can show tau deposits
insurance doesnt pay for either
the amyvid pet scan is used more now in diagnosing folks in the private world if the patient is willing to pay for it or if like me i was able to get it done in a research study for free

if you have alzheimers disease your amyvid pet scan will be positive
when my younger brother was first seen for memory loss he did not have a complete workup 
later though when he got worse he had a complete workup
my younger brother in his second workup had all the tests one would have at that time

i wrote that his mri was normal but my guess knowing what i know now about this disease that had he had an mri on that first visit  his mri might have been normal or it might have been abnormal
they might have seen some brain shrinkage and some changes in his hypothalamus on the mri
his amyvid pet scan had it been available would have been abnormal on that first visit

my mris have all been normal which goes along with my early diagnosis

so even in 2012 once we had the amyvid scan available you could diagnose someone who has alzheimers with a great degree of accuracy

also since 2012 the accuracy of reading the amyvid pet scan has gotten a lot better

just like in 2012 really the only meds to use to treat it has not changed
most get started on aricept (donepezil) or a similar drug like i was started on 

now in march of next year at the earliest the fda could approve the use of biogen aduanumab in the treatment of alzheimers disease

i should find out next month when the biogen aducanumab study i was in will be reactivated
if it does get reactivated i will restart my monthly infusions again
because of the covid 19 i have lost over a year of treatment infusions

so
make sure you or your loved one has had a complete evaluation for their memory loss
__________
04-27-2012
BEST TEST(S)

the new amyvid beta amyloid pet scan recently was approved by the
fda to scan for amyloid deposits in the brain for helping diagnose
alzheimers disease

that is it helps to diagnose alzhiemers
because you can have amyloid plaques form in the brain and not have
alzheimers disease
so the test is not a definitive test for alzheimers
it just adds icing to the cake to make the diagnosis



for example
if my younger brother had a neuropsychological exam done when he was
first evaluated it would have shown then that he had definite defects in his
short term memory
all of the blood tests and mris and depression screens would have been
negative
an amyvid scan would have probably been positive
his diagnosis then would be as definite as a person could be in 2012
now several years later we know he definitely has it as he has progressed
a lot over this period of time

he did not have the spinal fluid analysis and the apoe 4 genotype done
but more than likely he would have been positive for both

for me
i had a normal mental status screen that was normal then two years later
a full neuropsychological test that showed the development of early short term memory changes
all my lab tests and mris were normal
my apoe 4 gentotype was posistive for the double gene
my spinal fluid tests for beta amyloid and tau protein were borderline
my fdg glucose metabolism test was normal
my beta amyloid test similar to the amvid test was done but again i dont
know the answer to the results

if i had the amyvid test and it was positive then my diagnosis would be
more certain
although it would eliminate any hope for my future
i would know what i was facing for sure

so in summary the neuropsych test and the mri of the brain are the most
important tests to have done in evaluating someone for alzheimers disease
as well as ruling out other causes with labs and a good medical history
and examination
the amyvid scan just adds more certainty to the diagnosis

folks if you appear to have alzheimers or if you have a family member in
this situation
please dont resist taking medication as you want to be on this stuff as soon
as you are diagnosed
as it slows the symptoms of the disease for awhile
failure to take the medication may make your loved one progress quicker

it may save a few weeks or few months or if you are lucky a few years of
slowed progression of this terrible disease

thats why im taking aricept (donepezil)
i know it has no effect on this disease at all but only just slows the symptoms
for awhile
but there is nothing else available
yet
__________
i do feel like the fact that i have been on aricept (donepezil) for 8 years is one of the reasons that i have not worsen during that time


the organicgreen doctor