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 Finally Diagnosis 
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Joined: Fri Oct 28, 2011 1:41 pm
Posts: 9
Post Finally Diagnosis
Or as close as we are going to get at this point. After MRIs, mini mental tests, and two neurologist visits, the psychiatrist doing the Neuropsychology test at UTSW finally said "based on your mom's records, her interview, and yours, I would say we're looking at Lewy Body Disease".

It was a relief to hear someone "official" acknowledge what we knew back in November. It doesn't really change anything, but it is a end to the search for a reason for all of mom's symptoms for the past eight years.

Now we work on making her comfortable and keeping her happy, which is getting harder and harder these days.

I started a blog back when we began this journey - when we finally realized all mom's symptoms weren't arthritis (it sounds so RIDICULOUS now that doctors would have even considered that). And I'll keep blogging as we journey through this together. It is my way of keeping distant friends and family informed, keeping myself sane, and perhaps helping some other folks as we deal with all the ins and outs of taking care of mom at home.

Thanks so very much for all the info here! It really helps and I have linked back to it a few times from the blog to keep my family and friends informed.

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Trula's Caregiver
http://www.word-worthy.com/


Wed Feb 22, 2012 10:42 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finally Diagnosis
Yes, it is a relief to get an 'official' diagnosis. The first neurologist my husband saw in 2005 diagnosed him with either PDD or LBD--he said they were essentially the same disease. The last two neurologists have used Lewy Body Disease and Lewy Body Dementia with Parkinsonism as his 'working' diagnoses. Since his paranoia, hallucinations and problems with spatial perception and executive function began about the same time as his muscular stiffness, I guess it doesn't matter what it's called. Parkinson's, itself, is technically a Lewy Body Disease.

God bless you in your journey with your loved one.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Feb 22, 2012 11:24 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finally Diagnosis
Glad you got a diagnosis that you can believe in.

You probably know that "Lewy Body Disease" can refer to Parkinson's Disease, PD with dementia, and Dementia with Lewy Bodies. LB Disease is not the same thing as LB Dementia.

Chances are reasonable that your mom may also have arthritis, but of course that's not the only explanation of her motor symptoms.


Wed Feb 22, 2012 1:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finally Diagnosis
FWIW, my husband's chart reads: Lewy Body Dementia & Paralysis Agitans [which is Parkinson's Disease] in that order.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Feb 22, 2012 5:21 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Finally Diagnosis
and mine….

would rightly read: Lewy Body Disease….(as it does)
with MCI….

as I am pre Dementia……

and I am being set up for DATscan as we speak……so diagnosis could possibly be tweaked…..

DATscan is used a diagnostic tool for PD in Europe and I believe starting to be…..here…..

from what I have read….it will influence my decision on my diagnosis….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Feb 22, 2012 5:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finally Diagnosis
We'll be eager to hear the outcome, Craig. Perhaps you can fill us in on the procedure, too. I really think early diagnosis and treatment can make a big difference. Wish my husband had agreed to see a neurologist sooner than he did. Wishing you the best!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Feb 22, 2012 6:16 pm
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Joined: Fri Oct 28, 2011 1:41 pm
Posts: 9
Post Re: Finally Diagnosis
@Robin - Actually, probably Lewy Body Dementia. I don't use the word much around mom so I tend to shy away from it. She attaches more negatives to "dementia" than "disease". They assume Dementia because of her very rapid and very dramatic reaction to Sinemet, which they were introducing to see if it would help with her muscle stiffness and weakness. We are still coping with the horrible aftereffects of THAT experiment. Never again. But also her history indicates Dementia instead of PDD or any of the rest.

She does, in fact, have severe arthritis, but every time they would look at her spine, they would say that her muscle issues with her legs could not be coming from her spinal degeneration, without being able to pinpoint what it was. LBD, as it turns out.

Thanks so much for all of your informative posts, btw.

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http://www.word-worthy.com/


Thu Feb 23, 2012 12:14 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Finally Diagnosis
Not sure why a rapid and dramatic reaction to Sinemet would indicate dementia... Many with no cognitive impairment whatsoever can have hallucinations or delusions in response to Sinemet.

The umbrella term LB Dementia includes PDD.

Actually, there's no such thing as a pathological diagnosis of LB Dementia. If someone has LBs in the brain upon autopsy, they are said to have LB Disease. (And of course fewer than one-third of those with a clinical diagnosis of LB Dementia end up with LB Disease upon brain autopsy!)

The terminology in the LBD world is really messed up!


Thu Feb 23, 2012 1:28 am
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Joined: Fri Oct 28, 2011 1:41 pm
Posts: 9
Post Re: Finally Diagnosis
Well, as close to a diagnosis as the whole LBD family of diseases lets us get. I just wanted to be in the ballpark to avoid inappropriate drugs the rest of the family wanted to be "sure" (despite me telling them we couldn't really be sure).

Dr. Khemani at UTSW made the comment about the Sinemet, but I believe he made it in context. The hallucinations in reaction to the Sinemet would of course not indicated LBD standing alone. He just said something to the effect that this kind of reaction to the Sinemet in combination with her history indicated it was probably LBD and then the neuropsych people confirmed the same day.

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http://www.word-worthy.com/


Thu Feb 23, 2012 4:17 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Finally Diagnosis
Coincidentally, it was Dr. Khemani who taught me that any drug can be inappropriate for a given individual, regardless of the diagnosis, and to not get too hung up in the diagnosis. Lovely guy.


Thu Feb 23, 2012 4:41 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Finally Diagnosis
Just started sinemet for my parkinson's symptoms of rigidity and stiffness, plus gait disorder, vertigo and falls....I'm at two weeks today and no hallucinations, thankfully but dreams are more vivid (like with aricept and RBD)....but I will say sinemet has made a huge difference in my stiffness, muscle spasms, and balance in only two weeks....I am so glad you will have the DATscan Craig...let us know....based only on my clinical picture I think my doc may be right about my dx of LBD.....of course we'll know only in the end....in the meantime, the medicines are improving my quality of life and for that I am eternally grateful.....
Best wishes all....

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun Feb 26, 2012 9:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finally Diagnosis
Glad the Sinemet is helping you, Tonya. It made a world of difference to my husband from the start. He has been on carbidopa/levodopa in some form since March, 2005. I have no doubt he would have died several years ago without it.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Feb 26, 2012 10:08 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Finally Diagnosis
Thanks for the encouragement Pat - It's still making me a bit sick to my stomach but I am sticking it out! Thanks so much :)

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun Feb 26, 2012 10:14 pm
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