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 My father's LBD diagnosis has been changed 
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post My father's LBD diagnosis has been changed
Hi everyone,

This might be fairly unique. Our neurologist recently changed my father's diagnosis from LBD to Frontotemporal dementia. My father has parkinson's so the initial diagnosis was LBD, but my father has never had hallucinations, which the neurologist says is the hallmark of LBD. Now, after researching frontotemporal dementia, I believe the doctor is correct. My father's aphasia, behavior changes, confusion and deteriorating executive functioning all fit the FTD diagnosis better than LBD.

How often does someone get an incorrect diagnosis of LBD? I would imagine its usually the other way around?

And what now? I have been participating on this forum since February. I guess I'll have to search for an FTD forum.

Emanuel


Fri Jun 17, 2011 9:45 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My father's LBD diagnosis has been changed
My next-door neighbor's husband has FTD and his course has been quite different from that of my husband who has LBD [at least per diagnosis]. It is my understanding that a diagnosis of FTD is more easily supported through imaging techniques than are other dementias. [But my husband also experienced all of the features you named, as well, even early in his disease].

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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.


Fri Jun 17, 2011 10:24 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: My father's LBD diagnosis has been changed
Emanuel,

Someone gets an incorrect diagnosis of LBD a MAJORITY of the time (70-80%). The only way to know the correct diagnosis for any neurodegenerative disorder (FTD, LBD, or others) is by having the brain autopsied at death.

I assist people both nationally and locally (SF Bay Area) in making arrangements for brain donation. Once the family members die, these family often share the neuropathology report with me. In our local area, one person had an LBD diagnosis that ended up being one of the FTLDs (frontotemporal lobar degeneration) upon brain autopsy - not a single Lewy body was found in the brain. This was not surprising for one reason -- the gentleman never had hallucinations. (Like your father.) But it was surprising for another reason -- he was not middle-aged. (The majority of those with FTD are middle-aged. It's the second most common dementia among the middle-aged, after AD.) Outside the local support group, most clinical LBD diagnoses do not turn out to be LBD upon brain autopsy but I haven't seen another one with a confirmed FTLD diagnosis.

Has the neurologist considered either PSP or CBD? There are clinical presentations of both of those disorders that include aphasia, behavior changes, confusion and deteriorating executive functioning. If you email me, I will send you a very interesting paper recently published on PSP, CBD, and FTD.

An excellent information resource for FTD is the AFTD. You can find them online at theaftd.org.

There's a great new publication on FTD put out by the NIH:
http://www.nia.nih.gov/Alzheimers/Publications/FTLD/

A recommended online FTD support group is:
http://www.ftdsupportforum.com/
You must register to read posts.

You probably know that there's a much higher likelihood of genetics playing a role in FTD...?? Something like 40% of FTD is inherited. Is there a family history of dementia?

Robin


Fri Jun 17, 2011 2:25 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: My father's LBD diagnosis has been changed
Is your father on any AChEIs (Aricept, Exelon, Razadyne)? Apparently these meds are not prescribed for someone with FTD.


Fri Jun 17, 2011 2:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3363
Location: Vermont
Post Re: My father's LBD diagnosis has been changed
Emmanuel - first, let me say, there is no reason you cannot stay on this forum. If you are comfortable with the people and what goes on here and you have found a community of supportive friends, by all means stay here. If you want to join another forum too, there's no reason you can't be on more than one or two.
My dad had MANY possible diagnoses, including FTD, PSP, ALS, CBD, you name it. When I've been reading about FTD recently, it seems like that might have been the most likely neuro disease he had, but all his drs. and CNPs said he appeared to have at least 3 different neuro. diseases, so in the end, it really didn't make any difference.
I found this site a couple of years ago and found so much support, information, and made some very good friends, so I wanted to stay and I did. I hope you'll consider staying no matter what the diagnosis.
All the best to you, during very trying times. 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.


Fri Jun 17, 2011 5:06 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My father's LBD diagnosis has been changed
Emmanual,
There is no reason you can't stay on here if this is a place of comfort for you, you could seek out other forums for FTD and there "could" be another change in DX down the line, so I say stay where you want and where you have made friends and are comfortable with replies !

Good Luck !

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Irene Selak


Fri Jun 17, 2011 5:52 pm
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: My father's LBD diagnosis has been changed
Thanks everyone! I will definitely stick around. And yeah the diagnoses may be multiple and partial and who knows what? We deal with things day to day. :)

Emanuel


Sat Jun 18, 2011 11:48 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: My father's LBD diagnosis has been changed
Emanual,
That's the only way to do it a day at a time !

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Irene Selak


Sun Jun 19, 2011 8:29 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: My father's LBD diagnosis has been changed
My hb was originally dxed with FTD. We went to a major university hospital md who specialized in "other than AD issues" despite the insistence of the first neurologist that "I treat this all the time.". The second neurologist dxed lewy's because of the hallucinations. Hang in there. These are frustrating times for us, but our LO will be the better for our persistence in the end. ftdsupportforum.org is active and worthwhile. Even after our dx change, I still check the posts that seem to apply. There are overlapping issues and much support and good advice.


Mon Jul 04, 2011 3:18 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: My father's LBD diagnosis has been changed
challenged,
I think you mean http://www.ftdsupportforum.com I like that website too.
Robin


Mon Jul 04, 2011 10:49 am
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