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 confusing doc appointment... 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post confusing doc appointment...
just when i thought i was getting a handle on what was going on and understanding it the best i could,with the ever changing stuff of LB. we went to the VA neurologist and he threw me for loop... he has been seeing only the VA physiologist for 3 years and they felt it was time he saw the neurologist...

he gave hubby a mini test date, where are you, date, season, that sort of thing.. but then he added how old are you, how old are your kids, how many gkids ,names etc!! he couldnt answer any.. NONE!! 0 zip nada!! wow!!! yet he was able to carry on a perfectly ok conversation with the doc about other stuff.. its just when the questions came he couldnt think.. at all!! even the doc thought that was very strange, but had no ideas to offer as to why ??

he then said he didnt think there was enough info to give lewy body as the diagnoses.. but did mention the parkinsonisms and found he had a quite a few.. and was shocked at the violence of the hallucinations etc..... ended up giving him a diagnosed of ad with a possibility of lb being thrown in??? he rated his lack of cognitive thinking as severe ....

we also talk about ptsd.. which hubby has, as a possibility of causing lot of this and he said he agreed.. there was no way to rule it out and no way to make sure its the cause?? he felt him being in mai lai was a horrible shock for him.. in fact in bringing it up hubby, started just sobbing. trying to tell the doc how horrible it was...

he recommended risperdal for the hallucinations... even tho he is already on serequel for the that, supposibly.. he said no, the sereguel is for the depression and i said i thought the mirazipin was for that and that risperdal wasnt safe for folks who might have a lb??

it was at the end of the meeting and he just said discuss it with the physcriatrist at your next appointment..

so i left VERY confused to say the least... thanks for letting me vent!!
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri Mar 23, 2012 1:54 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: confusing doc appointment...
Risperdal was very dangerous for my husband but maybe it's not in every case. Personally, I wouldn't change any of his medications until you get another professional opinion. Just my opinion, of course. Hope you get some reasonable answers. It's so frustrating!!

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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 Mar 23, 2012 2:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: confusing doc appointment...
This sounds pretty straight forward to me with the exception of the Risperdal/Seroquel discussion, where the MD seems to be uninformed about your husband's medications. (This isn't an MD I'd be interested in seeing again, but your opinion may vary.)

Memory loss is a classic symptom of AD. LB Dementia commonly co-occurs with AD. Ascribing the parkinsonism and hallucinations to possible LB Dementia is reasonable.

Is the Seroquel helping your husband's hallucinations? If not, can the dosage be increased? If he's tolerating the Seroquel, I see no need to add Risperdal to the mix.

I'm a little confused about the MD your husband sees. You said "physiologist" and later "psychiatrist." I think a psychiatrist is well-placed to treat PTSD and LBD.


Fri Mar 23, 2012 2:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: confusing doc appointment...
Quote:
I'm a little confused about the MD your husband sees. You said "physiologist" and later "psychiatrist." I think a psychiatrist is well-placed to treat PTSD and LBD.
In most cases, it should be but it was a psychiatrist who prescribed my husband Risperdal.

_________________
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 Mar 23, 2012 3:36 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: confusing doc appointment...
But Risperdal works fine in some.


Fri Mar 23, 2012 3:50 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: confusing doc appointment...
i guess a lot of the confusion is that he is saying a lot of different things, than the other doc.. which is a physiologist....

all the meds he said were for one thing, the other guy said they were from something else...??

a question . do any of you who have lo's fail miserably on the little mini office tests but are able to talk coherently, most of the rest of the time... its almost like anxiety kicks in and he just shuts down when hes asked questions...

robin he was a very nice man.. but i waked away scratching my head at what he meant.. and no dont think ill be going back to him.. nice or not!!!

i got some clarity after getting a copy of his records today.. in the office he kept saying no lewy body.. but kept mentioning the parkinsonisms.. he did acknowledge the hallucinations being more in the lb..but would not budge in the office on any lewy body being present.. but after reading his chart just now.. he had acknowledged the possible lb.. sorry didnt make that very clear.. kinda threw the two together in my rant...

when i asked about the problems with risperdal he seemed leery that any problems even could exist... to me that was the scariest.. and no at this point to need to add more meds .. his hallucinations seem to be lessened, on what hes on
thanks...

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri Mar 23, 2012 4:35 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: confusing doc appointment...
Yes, my mother has gone to the neurologist, had a fairly normal conversation, and failed the mini-mental exam miserably. Twice. IMHO, it's not nervousness, it's that the mini-mental exam is designed to expose areas where the patient is deteriorating. So, for instance, my mother can appear to have a very normal conversation about the weather or something but she still cannot draw 11:00 on the face of a clock, or count backwards, or name five words that start with "m" or whatever else on the exam. I could take her home, in a comfortable environment, and slip the same questions into a casual conversation, and she would still fail them. It's because certain parts of her brain are failing.

As far as your doctors, I hope you can keep looking until you find a neurologist who has expertise in dementias. Even among neurologists, not all of them are experts on everything. The right doctor is so crucial. It doesn't matter so much if they are nice, but whether they are experts.

Good luck,

Julianne


Fri Mar 23, 2012 4:46 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: confusing doc appointment...
I would say that most people will LBD do very well on the MMSE (with the exception of the clock-drawing part, as Julianne has mentioned)...at least the MMSE taken early on.

People can certainly fail the MMSE but function OK at home because they aren't challenged at home to know the day, time, location, season, etc.


Fri Mar 23, 2012 5:29 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: confusing doc appointment...
thank you both..

julianne you hit the nail on the head...

we have been going to geriatric physc department the last few years...but there have been no neurologist in that department, for a few months.. so they sent us to the reg neurologist.. bet he doesnt deal with this often.. whew!!! that explained a lot...

hubby did fail the clock test.. even tho and this was a very loosely given test.. he usually get 50%.. not this time.. he got 0


the doc did one interesting thing, that no one has ever done before. he took a folded piece of small paper and tapped hubbys closed lips.. and showed how he pursed/ puckered his lips.( formed a snout) he said that was because the frontal lobe was compromised...

forgot to mention he had a cute little gal from the college across the way that was following him that day.. so he did share alot of the info out loud so she could learn.. she is doing a study in brain disorders for her masters thesis.. i believe...

thanks again

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri Mar 23, 2012 6:37 pm
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