omg this is long, sorry!

[Guest guest]

NO NO NO!!!

I am being misunderstood (usually from my poor communication!)

My question was about the lesions. I was wondering if it was

typically seen in your loved ones MRI's? The psychologist says

lesions and lewy body do not go together (I find the opposite from

what I have researched about dementia and lesions in general.)The

neurologist will not tell us anymore until neuropsych testing and our

appointment in December!(except it was not stroke related) So my

only question was have your loved ones had frontal brain lesions on

their MRI's?

As far as this going away, I am very certain it is not. There is a

long line of this in my family. My mom's grandmother, grandfather,

and two aunts all of died as a result of complications from various

types of dimentia. We have seen this in those family members just

not this young.

The reasons about the meds is they have really set mom back. See, in

the begining my mom was diagnosed with depression induced psychosis.

She was having very dark thoughts about people bugging our home,

trying to destroy family and health risk issues. She was unable to

work and we trested her with antipsychotics and depression meds. I

asked about dibilitating illness and was told no. We continued the

drugs and she imporoved for a short time. The psych changed drugs

due to sideeffects. Shortly after in the next few months the severe

parkinsonisms started to appear and steadily get worse. I started

pushing the psych more and talked to my family about finding a new

one. He finally decided to do something about it when I started

pushing harder and we found out mom was failing at work. We than had

a repeat MRI and bloodwork for heavy metals and such. We also

started discussing dementia. I am getting a degree in social work.

I had heard of Lewy body and researched it, the neurologist agreed it

should be a PRELIMINARY diagnosis, and we would do further testing.

We also decided that mom's abilify was going to kill her or hasten

her disease so rapidly it was aweful. So we changed to seroquel. We

had her on cymbalta also to treat the original diagnosis (which we

now know is wrong). If we had not put her on abilify and hastened

her parkinsonisms we never would of reached the point of diagnosis

that we are now. So, we have mom on a very very low dose of

Cymbalta, and we are watching. It is way lower than a standard dose

so we should be able to see change is there is going to be any. I am

for keeping her on a depression med. I truly believe she has had

undiagmosed/untreated depression all of my life. My dad wants to see

her try to forgo it. So I negotiated (with the psych on my side),

that we keep her on the lowest dose possible and see what happens.

Now for the seroquel, with each lessoning of the dose we see more in

mom. She is brighter, cognition improves and she smiles more. She

is on one 25mg pill at night right now. She has had one weird dream,

which she forgot about a few hours later, and other than that she is

doing the best we have seen her in a year. Becuase this disease is

so cyclical in nature, we know the phsychosis can cycle in and out.

We also know that seroquel is not a medicine that has to build up or

be weaned off from. We honestly believe my mother is one of those

patients that react very very very negatively to the antipsychotics

(well, we have seen it so I guess we know it more than believe it),

and we are using the rule of less is more. She also has a neuropsych

test this week. I am glad we backed off of the seroquel when we did

because she is cognativly more aware and although still slow in

thought and loses words, she is not with flat affect and silence

anymore. I think her tests will be more true in her

abilities/weaknesses.

So, my final thought is that in the beginging the abilfy helped her

to cease the psychosis and dark thoughts. We thought it had

stablized her. What it actually did (says the neurologist) is

possibly hasten the progression of the disease symptoms/sideeffects.

This also made it possible for us to see what disease it probably

is. It also showed us her hypersensitivity to these drugs and we

should be using them as sparingly as possible. Saving the higher

dosing or possibly the med itself for when symptoms are severe or

more progressed. This way we would not be harming her, but keeping

things under control. As far as something like aricept, I am

fighting for her to get that now. I am being told by the psych it is

expensive and only works about 1%. I am not buying that right now,

and I am waiting to meet with the neurologist to talk to him about

that. I have not been happy with the psych we have.

Hope that helps explain things! Sorry for the confusion or making

myself look like an ignorant dumby!