Re: Confusion of Diagnosis

[Guest guest]

Lee,

A Neurologist can confirm or rule out LBD with a brain biopsy. My Mom's

mood " swings are rapid and without warning. She is not violent but can go

from very angry to very happy happy happy in a heartbeat. I believe it is

the LBD. The protein deposits can form in the frontal lobe with controls

impulse control, mood, and behavior.

If I were you, I'd want a 2nd opinion.

Gladys

-- Confusion of Diagnosis

Now her psychiatrist isn't so sure she is LBD.

After much discussion about my past 44yr history with Mother...

He suspects she might be undiagnosed Bi-Polar with Parkinsons and

Dementia. It sort of makes sense. We both agree that her 'episodes'

resemble MANIC episodes.

This just all seems so trying at times. Mystery and confusion and a

house of Insanity.

He did say she will never be a candidate for a nursing home. She gets

too violent with staff. Her past history of being in institutions (2

hospital stays, 2 nursing homes, 1 ER visit) has proven that a psych

ward would probably be the choice. So it's ME or a mental ward.

I'm just so lost and confused I dont know what to think or believe any

more.

Lee

------------------------------------

Welcome to LBDcaregivers.

[Guest guest]

I may be wrong, but from what I've heard, if she has

Parkinson's and dementia, it would be Lewy Body, as LB

is present in Parkinson's. That's not to say she

couldn't have Bipolar, too.

Perhaps on the right medication, she would do alright

in a NH. I think I would get a second opinion from a

neurologist rather than a psychiatrist. They do tend

to have different opinions, but the neurologist knows

a lot more about the brain than a psychiatrist.

It was a psychiatrist that gave my husband all the

wrong meds and sent him reeling down the Lewy path.

What meds is she on? Aricept/Namenda/antidepressant?

Does he have her on any antipsychotic meds?

Just wondering. I think I would get some other

opinions.

--- " L . H. " wrote:

> Now her psychiatrist isn't so sure she is LBD.

>

> After much discussion about my past 44yr history

> with Mother...

>

> He suspects she might be undiagnosed Bi-Polar with

> Parkinsons and

> Dementia. It sort of makes sense. We both agree that

> her 'episodes'

> resemble MANIC episodes.

>

> This just all seems so trying at times. Mystery and

> confusion and a

> house of Insanity.

>

> He did say she will never be a candidate for a

> nursing home. She gets

> too violent with staff. Her past history of being in

> institutions (2

> hospital stays, 2 nursing homes, 1 ER visit) has

> proven that a psych

> ward would probably be the choice. So it's ME or a

> mental ward.

>

> I'm just so lost and confused I dont know what to

> think or believe any

> more.

>

> Lee

>

>

________________________________________________________________________________\

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[Guest guest]

Addressing the 2 posters...

I've never heard of a brain biopsy. Medicare pay for that? That

sounds dangerous! I thought there was NO confirmed manner to

diagnosis LBD or Alzheimers. It was my understanding that only an

AUTOPSY could confirm such diagnosis.

And as far as the Bi-Polar possibility... It actually would thrill me

to think of her as Bi-Polar. It would validate my 44yr history with

her. I always refer to her as Mother.... rarely call her MOM. Just a

play on words... but speaks volumes of the love/hate relationship we

had with each other. Sorry to be so blunt... but reality is reality.

But never the less... the confusion and mystery of her issues is

draining...

Had psychiatrist appt yesterday. He did admit she is a challenging

patient. Neurologist has made same comments. I've pretty much given

up trying to understand meds. My attitude at this point is... they

are the specialist... who am I to question?

I just want her calm... within reason of course... but MANAGEABLE!!!

Yesterday doctor upped her Seroquel to 250 at bedtime and 50 in

morning. I'm not saying this particular decision is the right one...

but I will say... SOMETHING HAS TO BE DONE!!! So I'm going to go

along with it, for now.

Lee

[Guest guest]

My mother had a brain biopsy - but it was not to confirm LBD - it was

to confirm a treatable form of dementia (which she didn't have and

instead they found lewy bodies in the small portion of the brain they

did the biopsy from) They couldn't say at a 100% she had LBD, but

finding lewy bodies in the small biopsy led that it was highly

likely. If anyone's interested I can post my mother's biopsy - it's

interesting to read. Although it'll have to wait until I get access

to my home computer.

Would I advise? Difficult question. When there was a possibility that

my mother had a treatable form of dementia (cerebral vasculitis) and

the only way to see this was through brain biopsy. I had to agree to

have it done. What if was treatable?? Also, my mother had about 4-5

different dx -- I needed a name. I needed to know & understand. But

would I ever want to experience going through my mother having a

brain biopsy again? No. We thought it would be a drill type

procedure - it wasn't - it was cutting the scalp, removing bone,

doing a biopsy. Then she had to have anti seizure meds & anti

swelling meds - and as sensitive my mother was to meds - this led her

to sleeping about 90% of the time for a month.

We didn't realize that the rapid decline was due to Risperidone at

the time. We just thought mom must have had some different thing due

to her rapid decline. Again, mom's neurologist wasn't " Lewy-savvy " --

but I know the Lewy-savvy doctors now in Boston. And that's why I

stick around, also do a local support group, to pass on the info I

learned. Mom would have had the best care had I known then what I

know now...

>

> Addressing the 2 posters...

>

> I've never heard of a brain biopsy. Medicare pay for that? That

> sounds dangerous! I thought there was NO confirmed manner to

> diagnosis LBD or Alzheimers. It was my understanding that only an

> AUTOPSY could confirm such diagnosis.

>

> And as far as the Bi-Polar possibility... It actually would thrill

me

> to think of her as Bi-Polar. It would validate my 44yr history with

> her. I always refer to her as Mother.... rarely call her MOM. Just

a

> play on words... but speaks volumes of the love/hate relationship

we

> had with each other. Sorry to be so blunt... but reality is reality.

>

> But never the less... the confusion and mystery of her issues is

> draining...

>

> Had psychiatrist appt yesterday. He did admit she is a challenging

> patient. Neurologist has made same comments. I've pretty much given

> up trying to understand meds. My attitude at this point is... they

> are the specialist... who am I to question?

>

> I just want her calm... within reason of course... but MANAGEABLE!!!

>

> Yesterday doctor upped her Seroquel to 250 at bedtime and 50 in

> morning. I'm not saying this particular decision is the right

one...

> but I will say... SOMETHING HAS TO BE DONE!!! So I'm going to go

> along with it, for now.

>

> Lee

>

[Guest guest]

Here is the partial email I sent to her psychiatrist...

Prior to hospital... in a 2wk period... she fell from

a standing position 4x's. Fell out of bed Twice. Fell

right out of her lift chair 3x's (leaned forward and

just tumbled out of it).

Went into this MANIC type phase. Would practically

RACE around the house for hours on end!!! within 10

days maybe, she was wheelchair bound. Hallucinations

of trouble making kids in the house. Then the little

WITCH showed up. (this isnt the 1st time) Her brain

REFUSED to shut down for sleep!!!! (not our 1st time

she's had that problem)

When the WITCH showed up I KNEW there would be

trouble. The WITCH is a trouble making little girl

that convinces le that people, or ME, is trying

to poison her, rape her, kill her, etc.

The hallucinations got pretty bad near the end, when I

finally put her in hospital. She could look at wall

(no window) and INSIST she was seeing people stealing

the car. Beyond bizarre. Went to toilet EVERY FIVE

MINUTES (strictly paranoia). Screaming DEMANDS of me

EVERY FIVE minutes. Then the neighbor found her laying

in backyard snow, trying to escape because I tried to

kill her. The WITCH told her that. I was

sleeping!!! (passed out snoring) from shear

exhaustion.

Drove her to Freeport ER Saturday morning... I think

it was March 8th? Did you hear how she was attacking

the hospital staff? Some poor nurse got choked,

clawed, punched etc. Poor nurse was shocked of her

strength, and couldn't believe she was being beat up

by a little old lady. le kept screaming at them

" are you a fairy? are you a queer? "

She was convinced they were trying to rape her.

They ran blood work, checked for bladder infection,

some head scan (CT?) No stroke, no bladder

infection... they couldn't find a medical reason

Medicare kicked her out of hospital tuesday. They did

increase her Namenda.

She now takes... 10@am (used to be 5) and 10@pm

They also upped her Seroquel...now takes 50MG@am (used

to be 0) plus they upped her bedtime to 200MG (used to

be 150)

This is where I get confused... the hospital SAID..

they never gave her the Alprazolam. She didn't need

it. THEY SAID her problem isn't anxiety. (whatever???)

I sort of understand it, but not quite.

THEY CLAIM the upping of Namenda/Seroquel should take

care of anxiety.

So I have NOT given her any alprazolam and I AM HATING

THIS!!!

I'll let you make this judgement call of med issues.

SINCE SHE HAS BEEN HOME.... ARRGGGHHHH!!!! This is NOT

the same woman from last month!!! SOMETHING HAD TO OF

TRIGGERED THIS? The GOOD NEWS is the WITCH is GONE!!!

The bad news.. she is still hallucinating something

fierce. Little kids continue to run all over the

house, and now adults are here as well.

PLuS... this isn't home... this is Swiss colony office

where she worked for 17yrs. She sees numbers on

everything... chair, table, shelf, walls,

etc. These numbers are her " batches " that she used to

process at work. She is asking me every 15 minutes to

help her with her batches. The batches she did

yesterday keep getting kicked back the next day as

incomplete. SHE PACES THE HOUSE CONSTANTLY!!! I am her

boss.

Then you add the Capgras Syndrome. There are 2

identical houses. this house and the other house. The

other house is the correct house (in her mind). There

are 2 of me... my twin sister is her daughter. I'm the

boss, or the caregiver, or the whatever... there must

be about 10 of me by now. I HAVE NOT BEEN THE DAUGHTER

SINCE SHE GOT HOME FROM HOSPITAL.

she will tell me I'm her daughter, but adds I'm the

OTHER daughter (Im an ONLY CHILD) Often she will ask

me how many kids SHE had. She KNOWS her grandsons when

she sees them... then asks them who their Mother is.

Last night I finally broke down and slipped 2

alprazolams in her ice cream. I HONESTLY thought I was

going to have to call 911. She was getting super upset

because I refused to take her home. I HONESTLY

thought she was going to get violent again.

She is starting to get really upset about me 'shoving'

pills down her throat all the time, as she puts it.

And the list of behaviors continue... but you get the

idea.

>

> Now her psychiatrist isn't so sure she is LBD.

>

> After much discussion about my past 44yr history with Mother...

>

> He suspects she might be undiagnosed Bi-Polar with Parkinsons and

> Dementia. It sort of makes sense. We both agree that her 'episodes'

> resemble MANIC episodes.

>

> This just all seems so trying at times. Mystery and confusion and a

> house of Insanity.

>

> He did say she will never be a candidate for a nursing home. She

gets

> too violent with staff. Her past history of being in institutions

(2

> hospital stays, 2 nursing homes, 1 ER visit) has proven that a

psych

> ward would probably be the choice. So it's ME or a mental ward.

>

> I'm just so lost and confused I dont know what to think or believe

any

> more.

>

> Lee

>

[Guest guest]

, I, for one, would like to see the Biopsy report.

And, I want to thank you for the Acronyms. Every now and then one is

used and I can't remember what it is. My memory is good, but is just

short.

Thanks dear, with a buncle of love,

Imogene

> >

> > Addressing the 2 posters...

> >

> > I've never heard of a brain biopsy. Medicare pay for that? That

> > sounds dangerous! I thought there was NO confirmed manner to

> > diagnosis LBD or Alzheimers. It was my understanding that only an

> > AUTOPSY could confirm such diagnosis.

> >

> > And as far as the Bi-Polar possibility... It actually would

thrill

> me

> > to think of her as Bi-Polar. It would validate my 44yr history

with

> > her. I always refer to her as Mother.... rarely call her MOM.

Just

> a

> > play on words... but speaks volumes of the love/hate relationship

> we

> > had with each other. Sorry to be so blunt... but reality is

reality.

> >

> > But never the less... the confusion and mystery of her issues is

> > draining...

> >

> > Had psychiatrist appt yesterday. He did admit she is a

challenging

> > patient. Neurologist has made same comments. I've pretty much

given

> > up trying to understand meds. My attitude at this point is... they

> > are the specialist... who am I to question?

> >

> > I just want her calm... within reason of course... but

MANAGEABLE!!!

> >

> > Yesterday doctor upped her Seroquel to 250 at bedtime and 50 in

> > morning. I'm not saying this particular decision is the right

> one...

> > but I will say... SOMETHING HAS TO BE DONE!!! So I'm going to go

> > along with it, for now.

> >

> > Lee

> >

>