Friday, July 21, 2017

alzheimers news-getting it right

ALZHEIMERS DISEASE-GETTING IT RIGHT
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in the past it was not always easy
to get the diagnosis correct
especially in the early stages of the disease

here are the stages that lead to alzheimers disease

prealzheimers-no symptoms yet

mild cognitive impariment(mci)-mild symptoms like me
some believe mci is early alzheimers

alzheimers disease-more advanced symptoms

even 7 years ago when i was diagnosed with mci
mild cognitive impairment
it was thought to be probably due to alzheimers disease
based on memory testing and history taking
but
really there were not anything else to do to come up with
a more accurate diagnosis

if you are wrong with your diagnosis
then you
start treatment with aricept (donepezil)
have the patient go through the side effects of the medicine
for years
and
if the diagnosis was wrong
well you just made a persons life more miserable than
the disease the person really had

of course in the workup of things that could cause memory issues
that are easily treated are ruled out
like abnormal electrolytes low b12 low thyroid depression
sleep disturbance etc

sometimes whats left is not always alzheimers disease
but may be caused by benign causes that really wont
worsen over time or will go much much slower than
alzheimers disease

so now in 2017
to have a workup for memory loss that appears to possibly
could be maybe alzheimers disease
the usual workup like i had at first is done
ruling out treatable stuff
if it all points towards alzheimers disease
then a more definitive diagnosis can be made

if its memory loss not due to alzheimers
you may not need medication and its accompanying side effects

if it is alzheimers
then there are a lot of research studies going on and are about
to happen on potential treatments for alzheimers
if you know you probably have it you can make yourself
more available for treatment

now you can have genetic tests done
for early onset alzheimers disease the inherited kind
apoe 4 gene signifying increased risk for alzheimers disease
a spinal tap and analysis for beta amyloid and tau
abnormal levels imply you have alzheimers disease

then
as a new study is showing
read this article on it
that the use of the pet scan amyvid for the bad beta amyloid
the hallmark of alzheimers disease
can rule out alzheimers disease as the cause of the
persons memory loss

insurance and medicare and medicaid will not pay for this test
however medicare medicaid and other organizations are sponsoring
a study to see if it really makes a difference these scans

its called the ideas study
i was attempting to get into this study to see if i could get the scan done
but i luckily qualified for the aducanumab study that i am in now

so what they have found is
that a significant number of people who have the diagnosis of
mild cognitive impairment and are on meds like aricept (donepezil)
really dont have alzheimers disease
based on the fact that their amyvid scans are negative

if your amyvid scan is negative you do not have alzheimers disease

i would hate to think that i took all this aricept (donepezil)
had all the side effects like dizziness blurred vision sleep disturbances
occasional veritgo fatigue leg cramps vivid dreams
and fasciculations

whats fasciculations
well eg you can look at my calves
and watch my muscle fasciculate
it looks like something is crawling back and forth under my skin
its from the aricept (donepezil)
people with other neurological diseases like huningtons disease
have them also

so these folks who have negative scans can now stop the aricept
i would love to be able to do that
and
almost get a reprieve from a terrible fatal diagnosis

granted their memory may not ever get better
but
it may not ever get worse either

physicians who referred their patients for the ideas scans
found that over half the mci patients didnt really have alzheimers
75% of the alzheimers patients did

no
sorry to say
my amyvid pet scan is positive
so this ideas study wouldnt have helped me any
except verifying the likelihood that i have alzheimers disease

note
other things can cause the scans to be positive
but
if its negative its not alzheimers disease

they need more folks for the ideas study
if you know someone who might qualify
here is the link
ideas study information

remember
we need financial support to fight this disease
and
emotional support to deal with it

join us as we walk this year

we will be doing the
alzheimers texas walk in georgetown texas
on saturday september 23rd
team name is organicgreendoctor

yes we will be in georgetown for the above walk
as we walk with our austin friends and family
do join us
come say goodbye to us

i also will have a team in the
santa barbara walk to end alzheimers 
on saturday october 28th
team name is organicgreendoctor.com

join us

the organicgreen doctor

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