Lewy Body Dementia: 5-year Diagnosis that comes down to 4 or 5 actual moments...why?

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Lewy Body Dementia: 5-year Diagnosis that comes down to 4 or 5 actual moments...why?

Lewy Body Dementia: The Five-Year Diagnosis that comes down to only

four or five actual moments...

With apologies to the movie Deadpool, that is in fact the truth and

one of the weirdest things I realized about Lewy Body Dementia and how

I finally got to this point. From the accepted-wisdom perspective, LBD

is one of those awful diseases that can only be assumed once every

other possibility is ruled out. And from a perspective that makes very

conservative sense.

From the perspective of the patient however, at least in my case, my 5

year-long diagnosis actually came down to four or five simple moments

that changed everything. With the benefit of 20/20 hind-sight I can

see where this tough-to-assume diagnosis could actually have been done

in a month or less with just a touch of common sense and at a fraction

of the cost in terms of time-lost, money spent and years wondering WTF

is wrong with me. I am not talking solid diagnosis but it is not

illogical to think that with a better neuropsych test, a neuro that is

only average but has a change in education and a specific PET scan

would do it in 30 days with 90% probability. Damned-near what I have

now after years of wasted time and money. The money should worry the

med pros, the time is of interest to the patient alone. Hell the

insurance company should get on-board with this.

In my case it came down to this:

1. Eventually I am administered a different neuro-psych test that

exposes the chinks in my grey matter. The one I have been given almost

95% of the time (this includes formal testing and the so-called quick

tests neuros do that takes like 5 mins), I often find myself leaving

his office with him thinking I am fine then I am thinking WTF didn't

he test me this way or that one, it would have easily shown the

issues. Thats one of those things you can never put in front of the

doctor before or after as they think you are walking in with a

presumption of diagnosis; I just wanted them to see the freaking

problem and most I could not get to. However in time, one tested me

just right and bingo all this stuff started to come out.

Years of wasted testing and worry later....

2. Disgusted with my current neuro of two years in Vegas I pick a new

one pretty at-random who turns out to specialize in epyilepsy (sp) but

agrees to see me anyways. I was seriously considering insanity at that

point because everything was screwing up, I was losing control of my

body and mind and not one doctor could even agree that something was

wrong. This dude took a look at me, asked like two questions, gave me

two very quick physical exams, both of which triggered the EFD and

aphais and in addition to that he sorted out an obscure (probably

unrelated but rare) childhood malady I had had. That day that neuro

seemed like a god to me but in retrospect he simply listened to me and

applied some simple common sense and realized in 20 minutes flat I had

brain damage, that it was probably degenerative (vs say stroke or his

specialty), it was causing my aphasia and apraxia and that I should

seek a different neuro with degenerative disease as a speciality. But

20...freaking minutes, he used nothing more than his ears, his eyes

and his brain and did more that fast than......well the guilty shall

remain nameless unless they tick me off but the take-away here is that

so far, all that was really effective was a specific kind of

neuropsych test should have sent me to someone like this the next

day. Based on the results of the neuropsych, obvious breakdown in the

frontal lobe was evident (this is 5 years ago) which results in

Execute Function Disorder and when this comes on with no obvious

reason, the probably family of suspects should come immediately to

mind and the trip to the neuro should be a no-brainer. And as this

shows, in the hands of the right (in this case about 8th) neuro, this

and few additional easily obtained facts should have lead to the more

directed testing of...

Far far too much time and BS later....

3. I am not certain on the specifics but I can state simply that after

years of testing and finding absolutely squat that it took a different

(and knowing my crappy insurance, not terribly expensive) PET scan

with the radio-active injection and there it was for all to see.

Thats it folks, all the years of worrying and wondering if I was

simply going insane, just too old to be useful (hell of a thought at

55) or ...what.

And the thought that just won't leave my mind, the one that is like

that guest that must be tricked into leaving is the statistic that I

get told time and time and time again: that LBD is the second-most

common form of dementia. So from one perspective, logically and

procedurally its a tough one to diagnose, I see the truth in that. I

also however cannot escape the evidence before me that it all could

have been this far long ago (even allowing for disease progression

resulting in more obvious symptoms for the slower diagnosticians)

resulting in far less.....everything. If I had been tested this way

and told you have a 90% chance this is LBD and here is what we think

will happen....can you imagine how grateful I could have been for

that? As opposed to so many more horrible things happening in the name

of being...no more sure than the Cleveland Clinic is now, all this

time, tears, worrying and wondering later. Who knows; maybe I have

some special case or simply made particularly poor choices in whom I

entrusted my personal future....but....no. If someone who hasn't been

to med school let alone any college connect these dots, this easily

for something that is supposed to be SO common, wouldn't you think the

trained professionals get there just a little quicker than they did?

Early diagnosis (or assumed diagnosis) doesn't do much for the

mortality but it does wonders for what you can do until then. I am not

kidding there. While the time is still what it is, with that knowledge

you can *make* that time of higher qualilty than you might not if you

go around wondering or worse, assuming nothing is wrong.

I would imagine the only thing a doc likes less than being wrong about

LBD is being right but from the patients perspective, for things

like this I wish that moral call simply wasn't up to him. I would

rather have the known facts and pick my own things to worry about.


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