my story revisited #99-spinal fluid donation

MY STORY REVISITED #99-SPINAL FLUID DONATION

i had forgotten about this story with the second spinal tap i had to have with the adni (alzheimers disease neuroimaging initiative) 8 years ago

with my first spinal tap my wife she got woozy even though she wasnt in the room with me
she had to be laid out and monitored for awhile
i even had to drive over to the mri building after the mri since she was still woozy headed

so with this second one as described in the blog below we prepped here for my getting the spinal tap
we laid her out in a lounger and didnt talk about my spinal tap at all
she did ok with this one 

with the first spinal tap they gave me some of the spinal fluid and i sent it off for analysis for amyloid and tau proteins
my results were borderline for what you see with alzheimers disease

the plan was to send some of this spinal fluid off again i think this was a year or two after my first spinal tap
the reason to retest was to see if the results would have advanced into the alzheimers disease range
i was anxiously awaiting the results from sending this second spinal fluid sample off
my guess is the result would have been positive

but
a researcher there at ut southwestern desperately needed a spinal fluid sample for an important multiple sclerosis study 
i instead donated my spinal fluid results to the researcher
i never found out if my spinal fluid amyloid and tau level worsened

i opted out of my last spinal tap at the end of the study
i knew i would be getting an amyloid pet scan when i started the biogen aducanumab study so i opted out
my amyloid pet scan was positive in that study so i am sure my spinal fluid would have been positive


here is the link to the transcript of my resent interview with being patient

to the person who posted that i got access to this drug because i was a doctor
sorry you are wrong
i got access to this drug because i volunteered to be in the study
you or your loved ones no matter what your occupation is could have volunteered to be in this study
at not cost to you 
it just cost you some of your time
the advantage
you get access to treatment months before others do

do like i did
search clinicaltrials.gov for studies
or check with the alzhiemers association website www.alz.org for studies
thats all it takes 
is time and effort
__________
05-02-2013
OOOOUUUUUCCCCHHHHH
yesterday as i sat in my whitey tighty undies almost naked
in that massage chair with just my socks on
no i wasnt about to get a massage
i had that paper blue gown on
sorry former patients if ive ever had you put one of these on
how embarrassing

i was about to get my spinal tap

i right now publicly want to apologize to those of you on whom
i might have done a spinal tap in the past when i was in practice
i now would be a much more sensitive provider to your discomfort

granted most of you would now be in your 20s-40s
as most of the ones i did in my career were on infants toddlers or
young children
luckily for the majority your taps were normal
except for the unlucky child who did have advanced
meningitis from h.flu in the pre h.flu immunization days
he nowadays wouldnt have gotten the disease that disabled him
unless he was one of those whose family didnt believe in
immunizations
this patient is the reason i always was such an advocate of
childhood immunizations and why i had such an awareness of
the symptoms of possible meningitis in kids
 
anyway i apologize to the rest of you although probably none of
you have any recollection of the painful procedure

ouch thats what i said yesterday
i didnt say that last time i got the tap two years ago
but as i said during the procedure
so thats what sciatica feels like
as a doctor i knew that as the needle is inserted into that
small space where the fluid is that sometimes you do hit
the nerve root that travels down the leg
yep i also thought
so thats what it feels like when they zap those cattle with
that cattle prod
i know my wife she would have like to use one of those on
me sometimes
she would love to hit my nerve root when i make her angry

but yesterday we had her all prepped
we laid her down
covered her with a blanket
and did not talk about 'it" with her before or afterwards
yes she did well yesterday
we handled her with kid gloves

wait a minute
whos the patient here

my goal  yesterday was to get my spinal tap and
send fluid off to the private lab to get my beta amyloid and tau
remeasured
i made a decision and went a different direction

you are only allowed to draw out so much spinal fluid at a time
if i sent the fluid off to the private lab i would know if my
levels had reached that abnormal level on the graph i showed
on this blog two days ago
in the consistent with alzheimers disease portion in the right lower side
instead
i opted to donate that fluid to a researcher who desperately needed
spinal fluid from a patient without significant other disease for a
possibly new landmark study for another well known disease
so
i let them have my spinal fluid for that study
knowing that i probably would not ever know if my level became
abnormal over the last two years
as i may not be getting another tap again

then
my other goal was to do my beta amyloid number two yesterday
even though i wouldnt see the results
then i planned to later this month get an amyvid beta amyloid pet scan
here in austin to tell me if i have that beta amyloid in my brain
that hallmark of alzheimers disease was present
yes
those two tests would have been the two things that would have
probably solidified my quest for do i have it or dont i

but
i decided to forgo that test yesterday and to forgo the beta amyloid
pet scan later this month

why

there are several new studies that are starting up soon that actually
are evaluating new medicines that either remove or stop the production
of beta amyloid in the brain or stop the tau destruction in the brain
these studies if they work would possibly be new treatments for
preventing or slowing down the disease

for them to be effective really effective they have to be started early
or even before symptoms or labs become abnormal

many of these studies will reject you if you have had a beta amyloid
pet scan in the last 12 months

so no fluid sent off so i wont know
no scan as i want one of these new treatments
as for now all i can do is to live a healthy life and do those things i
mentioned in my lecture and have on my slide things you can do now

__________
so
yes my wife she did ok with that second spinal tap
she did much better than i did since i got my nerve hit with the needle

i hope my spinal fluid helped advance some the knowledge about the care of multiple sclerosis
i only had to wait 3 more years to find out my amyloid status

the organicgreen doctor