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 Why his primary care physician missed LBD DX 
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Joined: Thu Apr 21, 2011 8:39 pm
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Post Why his primary care physician missed LBD DX
I had been wondering why his primary care physician missed LBD DX and then it occured to me. This man had never peaked into the waiting room, he came into the examination room after John was sitting, never saw him move any further than from the chair to the exam table, and left as soon as the exam was over. There was never a time when I could openly discuss John's symptoms without John present and although he told me I could call him with any questions, that was nearly impossible to do with his nurse running interference for him.
It was the same with the first Neurologist he sent us to.

When a Doctor finaly did diagnose LBD, the situation was completely reversed. Her nurse reported symptoms he displayed while being weighed in. After an initial consultation she sent John to another room and interviewed me. Unknown to me she had followed us back to the examination room and was able to observe his Parkisonian shuffle first hand. She was able to make the dx within 5 minutes.


Thu Apr 28, 2011 8:52 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: Why his primary care physician missed LBD DX
Are we talking DLB or PDD?

It's extraordinarily rare for a PCP to diagnose DLB. (I think I've seen only one here on the Forum.) PCPs can't even diagnose PD or AD very well; neurological disorders are not their specialty!

For that matter, neurologists can't diagnose DLB very well either. Note the diagnostic accuracy of pure DLB is less than 33% and DLB mixed with AD is less than 25%.

I believe DLB only became a separate disorder in the early 00s (2002?). I heard that only one day in medical school is spent on PD, which is far more common than DLB, so I'm sure DLB is given only a cursory look.

Personally, I don't fault the PCPs. I do fault the neurologists.


Thu Apr 28, 2011 9:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Why his primary care physician missed LBD DX
When our LOs are still able to pull it together and do show time at their dr. visits, the drs. don't see what is going on outside the office.
We found it very helpful if I made notes of what was really happening, gave a list of my observations to the dr. before the exam, and requested a meeting privately with the dr. either before or after the exam. This worked well, as my dad was super at show time in the first few months.
Lynn

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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.


Thu Apr 28, 2011 9:23 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Why his primary care physician missed LBD DX
Robin, I agree that it is pretty unrealistic to expect PCPs to diagnose specific kinds of dementia. What really gripes me is that Coy's PCP didn't even suggest other avenues to explore. She pretty much said, "He has dementia. Good bye and good luck." This kind of throwing the hands in the air and giving up is apparently still way too prevalent. There are specialists out there who can do a better job of diagnosing and even of treating people with dementia. But treating people with dementia seems to be a foreign idea to some PCPs. Grrrr...

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


Thu Apr 28, 2011 9:31 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Why his primary care physician missed LBD DX
Jeanne, I think there are a lot of physicians--including neurologists--who are reluctant to deal with dementia. I think this is due, in part, to their frank inability to do much about it. They simply don't have answers. Some patients and their families feel they have had far better response from geriatricians and geriatric psychiatrists than from neurologists.

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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.


Thu Apr 28, 2011 9:39 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: Why his primary care physician missed LBD DX
mockturtle,
In fact, Dr. Boeve's statement of good quality of life being possible for those with DLB was addressed to physicians! He felt that many were writing off those with DLB as just another untreatable dementia, when, in fact, it is highly treatable, given the right medications.
Robin


Thu Apr 28, 2011 10:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Why his primary care physician missed LBD DX
Not all of his patients have done as well as Coy has, however. And the statement that [I believe] he [Dr. Boeve] once made to the effect that he'd rather have LBD than any other dementia because it's more treatable strikes me as a bit ridiculous.

_________________
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.


Last edited by mockturtle on Fri Apr 29, 2011 12:58 am, edited 1 time in total.



Fri Apr 29, 2011 12:27 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Post Re: Why his primary care physician missed LBD DX
Pat, we love our geriatrician! She gets it both that quality of life is more important than quantity at this point, and that quality of life is worth preserving and improving. Her practice is not all about "curing" someone.

Robin, in case others haven't seen Boeve's article A Comprehensive Approach to Treatment can Significantly Improve the Quality of Life of Patients with the Lewy Body Dementias it is here: http://www.lbda.org/feature/2126/lbd-requires-a-comprehensive-treatment-approach.htm It is dated 2006. Talking to him this week Boeve is very upbeat about the positive results of research, but he seemed a little discouraged at how long it takes to introduce new concepts to the large medical community.

I know that drugs can be way overused for the convenience of the institution (Haldol anyone?) and as a substitute for more time-consuming personal interaction. But I am a true believer in the biochemical industry! Find more drugs, please! I would not willingly give up any of the drugs Coy now takes. And I am grateful for non-drug revelations of research. Exercise matters? OK, lets try it. Some things work, some things don't. Throwing up your hands and walking away definitely doesn't work.

Railfan, yes John's original PCP probably missed the diagnosis because he did not make careful observations, but he probably did not make the relevant observations because these types of diseases were not on his radar at all.

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


Fri Apr 29, 2011 12:45 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Post Re: Why his primary care physician missed LBD DX
In fairness to Derek's first neurologist, he wanted him on both Stalevo and Exelon as soon as he was diagnosed. Derek at that time refused the Exelon when he found out it was for dementia [or 'memory problems'] so it was two more years before he started the Exelon patch. Perhaps it would have made a difference.

I'm very, very interested in the inflammation issue as Derek has had a chronic prostatitis for probably fifteen years. He was on anti-inflammatories [Celebrex and, later, Rx ibuprofen] for years for arthritis in his shoulder but it obviously did not prevent Lewy. I wonder if anything has been studied on the effects of cortisone treatments [for any reason] on development of PDD or LBD.

_________________
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.


Fri Apr 29, 2011 12:57 am
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Joined: Thu Apr 21, 2011 8:39 pm
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Post Re: Why his primary care physician missed LBD DX
robin wrote:
Are we talking DLB or PDD?

.

Sorry, Robin, I missed that. It was DLB with symptoms such as REM disturbances and bad drug reactions going back a few years.

Our loved ones do try to pull it together for special ocassions. I'll never forget the hurt look he had on his face when he finaly tripped up and that doctor called him on it. Not that I had ever hidden symptoms from the doctor-I had expressed my concerns and his symptoms many times during the course of the illness- but I couldn't stand seeing him like that, that day, and quickly covered up for him.

During the last few months I came to realize just how desperately he was still working on getting back to "normal", even with me. I think we take things at face value all too often sometimes and discount the communication attempts of mentally disabled people as just the ramblings of a demented mind, not legitimate attempts to express their needs.


Sun May 01, 2011 3:52 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Post Re: Why his primary care physician missed LBD DX
Railfan wrote:

I think we take things at face value all too often sometimes and discount the communication attempts of mentally disabled people as just the ramblings of a demented mind, not legitimate attempts to express their needs.

So true! And how often I have wished for a 'Lewy translator'! :cry:

_________________
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 May 01, 2011 10:05 am
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Location: SF Bay Area (Northern CA)
Post Re: Why his primary care physician missed LBD DX
railfan,
Well, if we are talking DLB, then I really don't blame a PCP for not being able to make a diagnosis. DLB is a very new disorder, and may not even have been discussed while the PCP was in med school....unless he's a super-young MD.
Robin


Sun May 01, 2011 2:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Post Re: Why his primary care physician missed LBD DX
robin wrote:

DLB is a very new disorder
Is it really a new disorder or just being more recently diagnosed? If it really IS a new disorder then there must be some recent explanation for its occurrence, e.g., medications, environmental toxins or new pathogens causing it. Or maybe it was always just lumped in with AD in the past? It would indeed be interesting to know if it is a new disorder because of the etiological implications.

_________________
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 May 01, 2011 4:14 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: Why his primary care physician missed LBD DX
DLB is a new disorder. I think the first diagnostic criteria for DLB were published in the late '90s or early '00s. The most recent diagnostic criteria was published in 2005 -- they are called the "third report." And I don't believe there's a diagnostic code even today for DLB.

I'm not sure but I assume it was previously described as PDD. (I don't know if there's a diagnostic code for PDD.)

Many lay people don't understand that there's a difference between DLB and PDD, perhaps reflecting the fact that many neurologists disagree that there's a difference. At present, the difference is only a chronological one. The one-year rule is called "arbitrary" by many.


Sun May 01, 2011 9:25 pm
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Post Re: Why his primary care physician missed LBD DX
mockturtle wrote:
Is it really a new disorder or just being more recently diagnosed?

I found this code: 2011 ICD-9-CM Diagnosis Code 331.82 Dementia with lewy bodies. But I think that your question is the more interesting one, Pat.

Is DLB really "new" in the sense that AIDS is new -- that is, it was simply not found in humans a hundred years ago?

Frederick Henry Lewy discovered the abnormal protein deposits that acquired his name in 1912.

I'm inclined to think that our understanding and classification of DLB is new (and evolving), but I doubt that the pathology is new. I suspect that a century ago and earlier it was simply called "senility" or even "insanity."

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


Mon May 02, 2011 2:36 am
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