my story revisited #52-testing

 MY STORY REVISITED #52-TESTING

i wrote about this testing more than once in the last two weeks 
when i wrote this old blog from 2012 when i had memory testing it still wasnt normal yet
now it is
a lot of the testing i had done wasnt available in the private world yet and if it was wasnt covered by health insurance
some of it still isnt

now today one can have the complete work up i had done for memory loss in the private world granted some of it is not paid for by health insurance

you can have the usual work up done that insurance pays for usually like
a good history and exam
labs like cbc chemistry profile thyroid level vitamin b12 etc
in office memory testing like the moca or the mmse 
maybe a full neuropsychological exam if necessary
a mri of the brain
all of these can usually define whats causing ones memory loss

if you wont to have a more accurate diagnosis then you could have an amyvid pet scan for amyloid in the brain ie if you have alzheimers it will be positive

you could have genetic testing to see if you have the early onset genes or the late onset genes
these probably arent paid for by insurance
you could have a spinal tap and have the fluid tested for amyloid protein and tau protein levels
these levels change with alzheimers diseseae

soon maybe within 2-3 years an accurate blood test may be available that will tell you if you have it
my guess is it will not be covered by insurance to start with

or
you could volunteer for a research study like i did and have all this done for free
see clinicaltrials.gov

i did have to duplicate some of them and pay for them since the results were protected by the research study

much of the labs and memory testing and mri scans i got the results of
i had to pay for the spinal fluid tests and the genetic tests
i did get the amyvid pet scan results eventually

so when i wrote this blog in 2012 i didnt have my definitive answer yet as they came about 5 years later when i had my positive amyloid amyvid pet scan
i had my spinal fluid evaluated by then i think and it was positive

so i know my diagnosis
i am glad i know since i think i have slowed the symptoms down some for now with all i am doing

__________
02-03-2012
TESTING

if you are genetically related to me then you should be reading
this blog and doing all these things that are recommended

although most cases of alzheimers are not genetic ours in our
family may be

yes im talking to all my nephews and nieces and their kids
and of course their parents and cousins

multiple aunts and uncles had some type of dementia as well as
at least 2 grandparents and at least one great grandparent
and a 1st cousin of mine developed it under the age of 60
both my parents had it and my younger brother has it

because of this a close relative decided to get evaluated
they took the article that was written about my case and
showed it to their primary care doctor and to a neurologist

the labs were all done and were normal
the history and examination was normal
the lengthy neuropsychological test was done recently and
although described as a torture test like i describe it
the test was normal adjusted for age and degree of education

(my test showed and still does a deficit of short term memory loss
that is below what is expected for my age and degree of education
when compared to a shorter version which was normal two
years before)

they feel a sense of relief that everything was ok
its like getting a brain scan for severe headaches
and there not being any brain cancer or tumors
it doesnt mean it wont happen but its not showing up
as being there at the present
for me my last memory test shows that it has not progressed
which is like getting a scan and showing that a mass
has not changed in size

we all worry about getting the big a or the big c
the sense of relief from this work up is unmeasurable

the only part missing of course is some testing that is
not available yet to the general public-blood biomarkers,
spinal fluid biomarkers (beta amyloid and tau protein),
and a pet scan for beta amyloid
when these are available and done then an even more
reassurance can be given to patients
__________

so as of today i have had all the workup i need to have done

maybe later i might have the tau protein pet scan when it becomes more readily available
i dont think i need to have the blood test when it becomes available since the amyvid pet scan tells me what i need to know
so
i didnt get reassured like they did with their testing but at least i know

the organicgreen doctor