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 Diagnosing LBD With a Neuropsychological Evaluation 
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Joined: Tue Apr 24, 2012 5:11 pm
Posts: 15
Post Diagnosing LBD With a Neuropsychological Evaluation
If someone has Lewy Body Dementia, does it always show up on a neuropsych evaluation? I read someone's blog who was diagnosed with LBDementia, and they claimed theirs was "normal." I cried and cried when my mother got hers back. Her Verbal Comprehension was 105 but perceptual reasoning was 81 (and she was always a super bright woman!!). Then essentially anything to do with visual or spatial processing was abnormal (across categories), and everything else was low average. But the neurologist told me "they did not find anything." Then what am I seeing each day?! Why didn't they find a clinical case of dementia? Has anyone else experienced this problem?

In a nut shell, my mom can't plan, organize, and has a hard time cleaning / taking care of herself. I see her take forever to do things. She has her really good moments when she seems sharp and herself (and at most needs a little prompting to retrieve something from her memory). Then other times she does not turn off water, does not know the previous president, can't put the silverware in its slots, can't operate a lock button on a car, can't get water out of the refrigerator, does not remember doing things, can't find her way around the mall, does not see other people in the room with her, completely forgets recent events, and can't remember my husband's name. Sometimes she has bad days, and at other times it is just a few bad hours (or minutes!). She also hallucinates (she misinterprets pillows as people, hears full symphonies, and even smells smoke). Then she displays parkinsonism (very stiff, slow movements, tremor, muscle jerks, and falls/bad balance), is always tired, zones out of parts of conversations, does not want to be with groups of people/friends, and I see her flail/speak in her sleep when she has vivid dreams (her sleep study was also relatively normal). But it has been two months of frequent doctors appointments, and we have no diagnosis (meanwhile she is becoming increasingly dependent). At first the neurologist suspected parkinson's and dementia, but now he said parkinsonism and no dementia since the neuropsych evaluation did not reveal anything. But my mother REALLY struggles to get through basic tasks..... then there are times that she seems just like herself! I should also note that there were not any major issues on her MRI.

I feel so hopeless, especially when I read everyone's posts. It sounds exactly like my mom's challenges, but then why don't we have any type of diagnosis? I know it is just a label, but I need help making her comfortable and providing for her as I know she can't work. ... and I feel crazy at times when I call her doctor telling him how bad it is, we make an appointment, and she walks in seeming a little tired or slow but fine.


Tue Apr 24, 2012 8:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
Executive function and visuo-spatial perception were the first things to go with my LO. From what I've read here and in other forums, there is a genuine advantage to starting a drug like Exelon early in the disease. My husband refused to see a doctor until things had gone pretty dramatically downhill and only then because a family member who is a neurosurgeon arranged an appointment with her colleague and convinced him to go.

_________________
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.


Tue Apr 24, 2012 8:57 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
It is not just a label -- it is a potential basis for a treatment plan. That can make a real difference in quality of life for the patient and for the family. I think you went to the right kind of specialist, but maybe you need a second opinion.

If you care to list your mother's city, maybe someone would have a recommendation for you.

Obviously your mother does not have "not anything."

Good luck!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Apr 24, 2012 9:11 pm
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Joined: Tue Apr 24, 2012 5:11 pm
Posts: 15
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
Thank you, JeanneG and mockturtle. She lives in Houston, and I have an appointment for her with another neurologist in May. But I would prefer to find someone with LBD experience, even if only to rule out possibilities.


Tue Apr 24, 2012 9:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
A friend of mine's late husband, in his mid-fifties, started with many of the symptoms you described other than physical. I believe his dx eventually was FTD.
Do you think your mom is doing "show time" where she is able to hold things together when she needs to, and is still able to do that in front of drs. and others where she feels like she needs to be her old self? If so, that will not last forever.
But, in the meantime, I'd try to take her to another dr. I think others have given you excellent advice here already. Good luck and stop back often. Lots of good advice and support here. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Apr 24, 2012 9:19 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
A diagnosis of LBD cannot be made by a neuropsychologist. Neuropsychological testing is very subtle. Many do not have extensive experience with LBD, let alone autopsy-confirmed LBD.

Perhaps you can take the diagnostic criteria for LBD (find it on lbda.org) and list for the next neurologist how your mother meets the criteria.

Dementia isn't diagnosed on the basis of a neuropsychological evaluation either. Dementia means that cognitive and memory deficits are such that it appears activities of daily living, work, or social function.

Again, perhaps you can take this diagnostic criteria for dementia and list specific examples of how your mother meets the criteria.

Odd that her sleep study was normal. Was it videotaped?


Tue Apr 24, 2012 10:34 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
Here are two names of recommended MDs in Houston...

One movement disorder specialist (neurologist) lots of people like in Houston is Dr. Mya Scheiss at the Univ of TX. Have you seen her?

Awhile back I got the name of a geriatric psychiatrist -- Ranjit Chacko, MD at Baylor -- for someone in Houston. He's published a few papers on the use of antipsychotics to treat parkinsonism syndromes, such as Lewy Body Dementia. (I would avoid a neurologist at Baylor whose last name starts with the letter "J.")


Tue Apr 24, 2012 10:37 pm
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Joined: Tue Apr 24, 2012 5:11 pm
Posts: 15
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
Robin, those are excellent suggestions, which sound like they might help us move in a direction.

If your explanation is how dementia should be defined, then yes, she definitely has it. She held things together until she suddenly lost her job (she had a huge drop in functioning that lasted a few hours one day), and I see her really struggle on a day to day basis. So much so, that I have no idea how she kept her job until this past February. I feel horrible, though, because I thought she was having psychiatric issues so I kept telling her to push through. In reality it was something much, much more (and yes, I had her evaluated by a psychiatrist who is helping manage some symptoms--like depression, anxiety, and some fears--but they believe the issues are organic... hence referring us to see a neurologist). I had been so busy with school, and when I talked to her on the phone she sounded pretty good, so I did not realize what was going on.

Yes, her sleep study was normal, and I honestly do not know if it was videotaped. But when I have walked past my mother's room (she is staying with me right now), I have seen her talk in her sleep and thrash under the covers. When I woke her up, she was having a really vivid dream.


Tue Apr 24, 2012 10:47 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
Check lbda.org to see if she meets the diagnostic criteria for LBD.

I think the only way to diagnose RBD (REM sleep behavior disorder) is with a video polysomnography. If she has RBD, that would be a strong indicator of LBD.


Wed Apr 25, 2012 12:02 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Diagnosing LBD With a Neuropsychological Evaluation
I am not supposed to reply to any posts on any threads on the forum. Such is life.

I am supposed to PM strangers on a forum that don't know me except for lines of text on a screen and tag of LBD.

I am supposed to PM you if I think I should reply, with a comment or a question, because frankly, some people on the forum don't want me to participate at all.

……

But, I think that would be rude if I followed those rules imposed by the administration, and would surely get me banned completely from this vital link to information….for me. As it would only take one of you to say I was stalking you, or provoking you….or just scaring you….

…..

So, while I will not offer any suggestions, or first hand experiences with the issues you are facing, such as 3 neuro-pysch exams….3 sleep studies….similar declining features….years of limbo…..even two plus weeks at Mayo with a movement disorder specialist (who was going to send me home with no new answers)….before finally seeing a LBD expert….Dr. Boeve….and being in multiple research studies….identified as one of the earliest LBD patients in progression backed up with all the latest medical testing and clinical testing that Mayo has available…..and it is just theraputic for me….

….you could PM me…..first….or ask here for more….and I will risk getting banned to help someone.

_________________
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 Apr 25, 2012 10:10 am
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