amyvid the final answer

AMYVID THE FINAL ANSWER
amyvid
this is the test that ive been waiting for
its florbetapir
a radioactive labeled chemical that when injected in the vein
attaches itself to that sucky sticky protein called beta amyloid
thought to be the culprit in alzheimers disease

if you have alzheimers then you have a lot of beta amyloid in
the brain
and when amyvid is injected and a pet scan is done
the beta amyloid will show up as a bright red area on the scan

the worse you have it the more red stuff you will have on your scan
if you are early in the process like i am then you will have some
beta amyloid showing up on the scan but not near as much
as someone with full blown alzheimers

well i guess its like being pregnant though
either you are or you arent
you got the big a or you dont
thats the answer im after
do i or dont i

theres no real treatment
so what difference does it make
experts are hesitant to recommend this test for people to have
obviously they are not in my shoes or the thousands of other
people and their families who are the same situation im in

i want to know so i know what the future really is
its like being told well maybe that mass is cancer but we have a test
that will make the diagnosis more certain but we dont recommend you
have it cuz this cancer is probably not treatable
i want the test i want the final answer
it the final piece to the puzzle

ive had this test a year ago
its part of the adni study
and i will have another one next year
the problem is i will not ever get the results of either one
its part of the deal of being in the study

the evidence is against me on this alzheimers thing
ive had all the tests you can have to be as sure as you can be
(remember theyll know for sure when i die and they autopsy my brain
but i wont know)

these are the tests ive had
lots of labs to rule out other causes
3 mris that are normal
numerous neuropsychological tests including a lengthy 8 hour one last year
that shows some short term memory loss
a lot of blood work that ill never see the results of
i had the apoe genotype done myself which was positive for the
apoe4 apoe4 genotype for alzheimers
a fdg pet scan a glucose metabolism test that shows a defect on pet scan
if there is a decrease glucose utilization in the brain-mines normal
another is scheduled next year
i know my beta amyloid in the spinal fluid and my tau protein levels in the
spinal fluid as i had these ran myself-these are not normal but are not
where you see them in alzheimers
they are borderline numbers

my results are not all abnormal but are what you see as the disease begins
to kick in early on-remember most people dont know they have the problem
but may be noticing subtle things like i do and others definitely dont know
theres a problem-my wife she doesnt notice anything yet

the missing piece to this puzzle is the beta amyloid pet scan
brand name amyvid
i want it
to know where im at
i will be first in line for the test

if my amyvid scan is positive it will look something like the
scan of alzheimers disease below but not as severe
all the red stuff is the beta amyloid-thats what alzheimers
looks like

if my amyvid scan is negative it will look like the elderly
(im not elderly) control-no red stuff

my younger brothers scan as he is more advanced and is in a
nursing home will look like this



i know the limitations of the test
but when put together with everything else
its the final peace that i want

the organicgreen doctor

my story-final answer part two

MY STORY-FINAL ANSWER PART TWO
this is the part two of a three part blog on my story-final answer
this blog today will deal with the neurology visits, the medication
i am on, the research study im in, and the diagnostic tests that
have been done

next week the blog will be on what it all means for me and maybe
for you and your family

neurology visit
i met with the neurologist on december 21 2010
she interviewed me and my wife she
she also did a neurological exam on me
she reviewed the neuropsychological exam i had done-the one
where i did poorly on the short term memory portion

because i had a normal neuropsychological exam 2 years ago
followed by a abnormal neuropsychological exam 2 years later
because i had noticed problems with my memory over the last
few months and
because of my strong family history of alzhiemers disease in my
family-mother, father, a close younger relative and probably
numerous aunts and uncles
she felt and i agreed with her that i had early mild cognitive
impairment amnestic type probably from alzheimers disease
(remember alzheimers disease is only 100% diagnosed at autopsy)

she felt and i agreed with her that i should start on a medication
called aricept (donepezil)
i knew that medicine well
i had just written it for a patient of mine the day before as he
has mild alzheimers disease
my mother was on the same medicine and my close relative is
presently on it

so why do i need to be on this medicine
if what i have is due to alzheimers disease then it will progress
rapidly or may progress slowly but it will eventually progress to
the same awful end point

the medication aricept (donepezil) doesnt stop the disease process-
that deposition of amyloid in the brain and the unraveling of the tau
proteins in the nerve cell that may be the cause or end result of
alzhiemers-
it just marches on no matter what

the aricept (donepezil) inhibits acetylcholine esterase an enzyme
that breaks down acetycholine in the nerve cells
by inhibiting this enzyme the levels of aceylcholine stays elevated in
the nerve cells so what nerve cells remain work better

by taking the aircept (donepezil) the aceylcholine levels are kept
high and the brain works better
if you stop the aricept (donepezil) the acetylcholine levels drop and
the brain doesnt function as well
the bad thing is when you restart the aricept (donepezil) you dont
regain back to where you were

so it was decided that i take the medicine to maintain my status
where it was now rather than wait to see if my memory got worse
then start the medicine ie i would have lost ground that i could
never regain

so i have been on the medicine now for 7 months
the side effects are tolerable
it causes vivid dreams more than ive had in the past
it causes a figgidness especially in the morning time after i take it
i have to go outside and work or take a long walk
it also causes a restless leg like symptoms especially at night
it also interferes with sleep
both of these symptoms are relieved somewhat by taking a
childs dose of benadryl
i have not had any of the gastrointestinal symptoms that some
people have

so i have stayed on this medicine now and will stay on it until
it doesnt work anymore
at that time usually another medicine is added to the
aricept (donepezil)
when that will be i dont know
it could be in 1-3 years or 5 years or 10 years or never

i then underwent testing to rule out other treatable causes of
my memory loss
i had a complete blood count to rule out anemia, infection, leukemia,
a complete metabolic panel to rule out diabetes, electrolyte
problems, kidney disease, liver disease, a tsh level to rule
out hypothyroidism, a b12 level, a hiv test, a syphyllis test, hepatitis
screening, a urinalysis, and a sed rate to rule out inflammation--
all of these were normal

i had an ulrasound of the carotids to rule out blockage to the arteries
in the neck--this was normal

i also had a mri with and without contrast to rule out aneurysm,
tumors, strokes, circulatory problems, brain shrinkage, and
increased fluid in the brain--the mri was nomal

i was also screened for depression several times and i dont feel
depressed and the screens were negative for depression

after a few months on the aricept (donepezil) i did a followup
visit with the neurologist
i will see her every 6 months and will remain on the medication

i also was now able to enter the adni-2 (alzheimers disease
neuroimaging intitiative) study at the university of texas medical
school memory clinic since i was stable on the medication

this study is important as it may define how a person is
evaluated for alzheimers disease in the future with these tests
that i am having done

this time i was entered not in the normal control group but in the
early mild cognitive impairment group
the other groups are normal, late mild cognitive impairment
and alzheimers disease (aint there yet)

during the initial visit i had another neuropsychological exam,
a screen for depression, the same labs as above, and an
mri of the brain-the short term memory problems were still
present and the labs and mri were normal

i then had blood drawn for genetic tests and other dna and
rna tests-one of these genetic tests is for the apoe 4 genotype
which is known as the alzheimers gene
i underwent a spinal tap for amyloid protein (beta amyloid protein)
and tau protein-more about them later
i had a fdg (flurodeoxyglucose) pet scan which measures glucose
metabolism in the brain
in alzheimers disease the glucose metabolism slows and the fdg
pet scan shows early on in mild cognitive impairment a decreased
uptake in or near the hipppocampus on the undersurface of the
brain where memory occurs

above is a fdg scan that shows decreased uptake (the red color)
in mild cognitive impairment  and in alzheimers disease

i also had a florbetapir f 18 pet scan which measures amyloid in the
brain-this is a research pet scan not available outside of research-
in mild cognitive there is an increase uptake in the hippocampus area

as the disease progresses (as more amyloid gets deposited) the
scan turns positive diffusely across the brain

this is a scan similar to the amyloid scan mentioned above
you can see the increased red amyloid deposition in alzheimers
disease vs a normal control scan

i will never see the reports of the labs, mris or the pet scan reports
as they are protected by the research study
that is part of the deal

i will have the pet scans and lumbar puncture every 2 years
i will have the mri at 3 mo 6 mo 12 mo 24 mo 36 mo 48 mo
i will also do neuropsychological tests, depression tests, and
blood work at each visit

i elected to have the apoe genotyping through my primary care
provider as i wanted to know the results
i felt like i was well versed on alzhiemers disease and understood
what the apoe tests mean and what limitations it has

the apoe gene is called the alzheimers gene although it is one of
several that may be associated with alzheimers
the apoe gene can be 2, 3, or 4
apoe 2 may be protective for alzheimers
apoe 3 may have milder degrees of alzheimers
apoe 4 i call it the sucky gene

a genotype of  a single apoe 4 gene (heterozygous for you
science folks) carries a risk of 10-50 % chance of developing
azheimers disease
a genotype of double apoe 4 gene/apoe 4 gene (homozygous)
carries a risk of 50-90 % chance of developing alzheimers disease

well i got screwed it looks like
i have the apoe 4/apoe 4 homozygous gene
ie i got it from each of my parents

i also opted to obtain spinal fluid for analysis of biomarkers for
alzheimers disease through my primary care provider
one of them is the beta amyloid protein
in alzheimers disease as the amyloid gets deposited in the brain
the amyloid levels go down in the spinal fluid

well i got screwed again as my beta amyloid protein is low in my
spinal fluid

the other test on the spinal fluid is the tau protein
its a protein thats found in the brain thats involved in the nerve cells
as this protein gets unraveled it gets phoshorylated and the p-tau
levels in the spinal fluids go up
well my levels were in the borderline level for alzheimers disease

here is a graph of my results
the left side of this graph  is the beta amyloid level
the level is low
the horizontal side is the ptau level
the level is borderline

so i have a normal neuropsychological exam 2 years ago followed
by abnormal neuropsyhological exams showing short term memory
problems,
noticeable memory problems to me,
a strong family history of alzheimers,
a positive apoe 4/apoe 4 genotype,
a low beta amyloid in the spinal fluid and
a borderline level of p tau protein in the spinal fluid

all of these point to azheimers disease as the cause of my mild
cognitive impairment

if i could see the reports of the fdg pet scan and the amyloid pet
scan i would have an even more accurate picture of where i stand

next week in part three i will try to put all of this together and what
it means to me, my family and possibly to you

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the organicgreen doctor