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 Diagnosis really comes down to four or five moments... 
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Joined: Fri Mar 10, 2017 11:36 am
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Post Diagnosis really comes down to four or five moments...
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.


Wed Mar 15, 2017 1:29 pm
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Post Re: Diagnosis really comes down to four or five moments...
Thank you Jeff for sharing, it is such a help to know that others have had to walk this frustrating road, as I am now.

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Jim


Thu Apr 13, 2017 2:36 pm
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Post Re: Diagnosis really comes down to four or five moments...
Jilytibrme wrote:
Thank you Jeff for sharing, it is such a help to know that others have had to walk this frustrating road, as I am now.



You are beyond welcome good sir. When I first got diagnosed I scrambled to grab all the information I could find on it. Forewarned is forearmed and all that rot. And while you will find tons of books and forums to help the docs and caregivers, there is an absolute void when it comes to the patients perspective. From one perspective it doesn't say much about how much the patients can contribute to the overall conversation and for how long...

If LBD is so damned common then others have to be in the same boat I am since there is nothing special or unique about me or my case...so thats why I write here. I write still because its far easier than speech for me and I figured in a rather selfish way, if others are going through what I am and we find some common ground (or gripe) then perhaps the pain is a little lesser for all, including me....


Thu Apr 13, 2017 7:42 pm
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Joined: Sat Mar 04, 2017 10:02 am
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Location: Near Fort Bragg,NC
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Post Re: Diagnosis really comes down to four or five moments...
Jeff/All,

What is the difference between a "working diagnosis" of Lewy Body and possible or probable Lewy body diagnosis? Right now I've been given the first one.

Thank you

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Jim


Fri May 12, 2017 3:41 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: Diagnosis really comes down to four or five moments...
Jilytibrme wrote:
Jeff/All,

What is the difference between a "working diagnosis" of Lewy Body and possible or probable Lewy body diagnosis? Right now I've been given the first one.

Thank you

To me they sound similar, with the former sounding a little more "for sure". Hell, that might be all they say about mine too but as I see things in my everyday life, I am probably more certain about the LBD than the docs are willing to admit. Tell me: what was the final bit of "evidence" that lead to the working diagnosis?


Fri May 12, 2017 7:54 pm
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Post Re: Diagnosis really comes down to four or five moments...
Thanks Jeff,

A new Neurologist! Believe it or not.
Symptoms

Degraded Cognitive Function
Compromised Executive
Testosterone Replacement Therapy
Depression
Hallucinations (audio)
Restless Leg Syndrome
REM Sleep Behavior Disorder
Confusion/Disoriented
Progressive Memory Loss
Dizziness- Stumbling
Disorganized Speech
Reduced Attention Span/Concentration
Heavy Sweating
Low Libido
Mild tremors (Right Hand)
Abnormal Swallowing Effort
Stiffing Muscles

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Jim


Sun May 14, 2017 9:07 pm
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Joined: Thu Sep 28, 2017 2:06 am
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Post Re: Diagnosis really comes down to four or five moments...
Although we are new to the LBD world, I find it both overwhelming and interesting for all. The possible difference between "working" and "probable" could be the simple fact that LBD cannot actually be a sure thing until, as our doctor put it, "you are done using your brain". Meaning you can only know for sure post mortem thru an autopsy. We plan to make arrangements to donate my mother's brain to the local brain bank for research. The doctor has already asked for it. Sad to talk about it that way, but further research is very much needed on LBD and ways to treat the symptoms.


Thu Sep 28, 2017 3:17 am
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Joined: Sat Mar 04, 2017 10:02 am
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Location: Near Fort Bragg,NC
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Post Re: Diagnosis really comes down to four or five moments...
Thank you cllowry and thank you for your moms helping to finding the cure!

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Jim


Tue Nov 21, 2017 9:13 pm
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