Re: diagnosis LBD???

[Guest guest]

Barbara, I am guessing that my husband has AD plus LBD. Especially after a

Doctor on another List said I was describing LBD to a " T. "

My husband was diagnosed with AD. But--- He started having heavy

hallucination early on. He can change personalities in a flash. (He didn't use

to be

that way) He started fighting his hallucinations, and I was told that was

dangerous for me, He was put on Risperdal and has not fought with his

hallucinations since. But, I know it can have a breakthrough and happen again.

LBD shows signs of some Parkinson's disease, as well as Ad. He has been

going down hill pretty fast. He is as lucid as you or I, and the next minute he

is not. He knows what is going on. My sister with AD does not know she is sick.

Imogene

In a message dated 4/2/2006 8:17:48 PM Central Daylight Time,

mmmm88f@... writes:

I often see that you all have a diagnosis of LBD. Now as an RN for 35 years

I know that people are often misdiagnosed. I also know that doctors have to

provide a diagnosis for legal and insurance reasons. But there are real

medical diagnoses and that is what I am confused about.

I was under the impression that the diagnosis of LBD could not be confirmed

until the patient was dead and the bodies were found? Can some of you help me

out with this confusion? I note that many of you are sure that you or your

loved ones have this disorder. And you seem to be sure of this diagnosis. How

is that that you are sure. I do not undeerstand is there a number of

symtomes that assures that the diagnosis is likely? I often have noted in the

posts

that people say that in retrospect I see that my loved one had this disease

for many years before the diagnosis.Could some of you explain how that is?

Thanks Barbara

[Guest guest]

In my mother's situation she was diagnosed and rediagnosed and

rediagnosed again - from dementia caused by alcohol, to AD, to

Binswengers, to AD + Binswengers, to VAD caused by ministrokes, and

now LBD. But for my mother, it is pretty much confirmed b/c she had a

biopsy back in February when they were testing to see if she had

Cerebral Vasculitis (treatable disease). And as they wrote:

" Although the diagnosis of Lewy body disease is made on the basis of

post-mortem examination of numerous regions of the brain, the

presence of numerous Lewy bodies in a small cortical biopsy makes a

diagnosis of Lewy body disease highly likely. "

But before that my gutt was pretty certain my mother had LBD - I

spent days researching the different dementias:

* Vascular Dementia

* LBD

* Creutzfeldt Jakob Disease

* AD

* Frontotemporal Dementia

* Progressive Supranuclear Palsy

* Corticobasal Ganglionic Degeneration (CBD)

* Binswengers Disease

And although most of above show very similar symptoms, all of them

have one or two symptoms that are different from each other. And the

only disease listed above that mom showed ALL of the symptoms was

LBD. It was the only one that my reaction was, " Eureka! By golly, I

think that's it! "

BTW when the neurologist was talking with his students about my

mother - he did an interesting thing. He tapped her forehead between

the eyes and said " See. She doesn't have Frontotemporal Dementia. "

(b/c she blinked - thought that was interesting).

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy)

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

I was under the impression that the diagnosis of LBD could not be

confirmed

until the patient was dead and the bodies were found? Can some of you

help me

out with this confusion? I note that many of you are sure that you

or your

loved ones have this disorder. And you seem to be sure of this

diagnosis. How is

that that you are sure. I do not undeerstand is there a number of

symtomes that

assures that the diagnosis is likely? I often have noted in the posts

that

people say that in retrospect I see that my loved one had this

disease for many

years before the diagnosis.Could some of you explain how that is?

Thanks

Barbara

[Guest guest]

Barb,

There are lots of conditions that have no lab tests--they are diagnosis by a

list of behavioral criteria or by elimination. LBD is one such

condition/disease. We are living in the " CSI " generation and want " scientific "

evidence for everything. Unforturnately, this isn't possible, and for the most

part, the legal and medical communities recognize this. Even insurance

companies, the hardest to convince :-), generally accept a diagnosis by

criteria/elimination rather than requiring more " scientific " evidence.

It's frustrating for all of us not to have a more definitive diagnosis. However

the LBD spectrum is so all over the board and such a roller coaster, that even

if we did have lab tests for it, it wouldn't help a lot. Our Loved Ones (LO)

would still do " show time " for outsiders where they appear almost completely

normal for short periods of time in a public situations and revert to Lewyville

only at home with their caregivers. This is such an evil disease. Many

caregivers on this board are considered " over-reacting " by people who don't see

our LO's day-to-day. Jan, among others, has lots of stories about this.

This is just to say that you are not alone. We've been there/are still there,

and we understand.

Margee

[Guest guest]

Yes, my husband has a diffinent gait problem. He is slower than mollasses in

Jan.

I do believe his medication is giving him problems. So, I had him take half.

Imogene

In a message dated 4/4/2006 9:41:17 PM Central Daylight Time,

LadySmilingAtU2@... writes:

barbara,

you are so right the only way to geta 100% accurate diagnosis is an autopsy

.. but if you look at the list of symptoms like we did when lewy body was

suggested as a ;;ppled possible diagnosis we meaning dad and i looked it up on

the computer, and it described dad to a T. he was having unexplained falls

for 4 years that i didnt know aobut it. he would be walking or hanginng his

laundry, and all of a sudden be on teh ground and wouldnt know how he got

there. he went o many docs and had ct's mris etc with no diagnosis for his

falls.

i had noticed his parkinson shakes but he was diagnosed as he didnt have

parkinson, dad also reacted bad to several medications so that and several

others things made me sure that we had dad diagnosed properly the gait, the

shuffling, teh falls, the fluctuating cognititoin all of it just fell into

place

with daddy. take care and hugs sharon m

Date: 2006/04/02 Sun PM 07:57:16 EDT

To: LBDcaregivers

Subject: diagnosis LBD???

[Guest guest]

barbara,

you are so right the only way to geta 100% accurate diagnosis is an autopsy .

but if you look at the list of symptoms like we did when lewy body was suggested

as a ;;ppled possible diagnosis we meaning dad and i looked it up on the

computer, and it described dad to a T. he was having unexplained falls for 4

years that i didnt know aobut it. he would be walking or hanginng his laundry,

and all of a sudden be on teh ground and wouldnt know how he got there. he went

o many docs and had ct's mris etc with no diagnosis for his falls. i had noticed

his parkinson shakes but he was diagnosed as he didnt have parkinson, dad also

reacted bad to several medications so that and several others things made me

sure that we had dad diagnosed properly the gait, the shuffling, teh falls, the

fluctuating cognititoin all of it just fell into place with daddy. take care

and hugs sharon m

Date: 2006/04/02 Sun PM 07:57:16 EDT

To: LBDcaregivers

Subject: diagnosis LBD???

Hello all,

Boy I was surprised at the response that my comments (about my mother not being

the perfect mother that some have been blessed with) got. It both hurt to hear

that there were so many of you and was a relief to know that I am not alone.

Not to bore any of you about my mom and I am sure that I do go on too much but

my mother thinks that she was a perfect mother. At least she behaves as if I

remember every thing wrong and that i am the one that needs psychiatric help.

Some times she has been successful at convincing " social workers " that I am the

problem.

Last summer I was her guardian because she had been in the mental hospital and

the courts had declared her incompetent. She convinced a doctor that she was

completely competent and got him to sign paper work that verified this and the

courts rescinded the incompetent stasis. She convinced the doctor that she was

ok and that they ahd just put her in the psyc ward because she was old. I left

because she, behind closed doors always , was hitting me spitting in my face and

was destroying my clothing and on and on.

The social workers from the division on aging helped her working with her

doctor get the competency stasis back. I left for that great job in Alaska (as

far away as I could get from Ohio and still be in the US). In less than 6 weeks

my mother was back in the hospital for her bizarre behavior. ie Sitting in the

driveway at 2am, yelling at the neighbors and so on.....crazy stuff. The social

worker came to her rescue saying that she had a UTI. and so on and that that she

once again was being misunderstood and that people wer ignoring her and over

looking her because she is elderly. Mother was put on anti-psychotic drugs and

came home. She almost died with side effects(neuroleptic malignant

syndrome).There wer nurses and social workers comming in two or three times a

week and they did not help her as she plummeted to the point where she could not

walk or go to the bathroom. I was in Alaska and my daughter had to callan

ambulance to come and get her nad take her to the

hospital. My daughter lives in California and mom in Ohio. She was then put in

a hospital and taken off of her anitpsychotic meds and put in a NH for

rehab.They at the rehab did not know why she was there just that she needed

rehab. She called me and begged me to come from Alaska and as i said in the

other post I did. Like a fool. Thinking she would stay the way that she was

nice and letting me do what needed to be done.Like an idiot I took her out of

the nursing home and she prommissed she would give me POA so iI could pay the

bills. She did not do that.

Now she has gotten well again and is driving and being awful to me .

I think that I must leave here because I just cannot live like this and she

swears that she is able to take care of herself. She will not let me have power

of attorney and there is no way that I will ever go through the hell of being

her guardian. The lawyers the courts the ongoing crap from her .Like not being

allowed to leave my room and use the shower and the physical abuse. And the

never ending theam of me being the crazy one and I am just here to live off of

her and steal her stupid f.....ing money.

Like I said i am ruined as I gave up my little home have spent all my funds and

have given up three great jobs to help her.

What i started out to ask is about this disease.

I often see that you all have a diagnosis of LBD. Now as an RN for 35 years I

know that people are often misdiagnosed. I also know that doctors have to

provide a diagnosis for legal and insurance reasons. But there are real medical

diagnoses and that is what I am confused about.

I was under the impression that the diagnosis of LBD could not be confirmed

until the patient was dead and the bodies were found? Can some of you help me

out with this confusion? I note that many of you are sure that you or your

loved ones have this disorder. And you seem to be sure of this diagnosis. How is

that that you are sure. I do not undeerstand is there a number of symtomes that

assures that the diagnosis is likely? I often have noted in the posts that

people say that in retrospect I see that my loved one had this disease for many

years before the diagnosis.Could some of you explain how that is? Thanks

Barbara

Janet Colello wrote:

Hi,

I am in the process of putting Jim into a study

program on dementia at the University of San

Francisco. At the Symposium in DC they, the

researchers, mentioned that they need live studies

done and seem to have many brain autopsies, which they

DO need, but stressed that they need people in study

programs, that they can study now while living and

that not enough neurologists and doctors are asking

patients to volunteer in these programs or even making

them aware of the programs. Jim many years before I

knew him got his things in order for his death and

decided that he wanted his remains to go to the

University of San Francisco as a Cadaver. So they will

already have a study on him too in the end.

I don't know if they can do a brain autopsy on him,

since there is something mentioned that no organs can

be removed from the remains for the study of the

cadaver, but maybe something can be worked out, I

don't know. Jan

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

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