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Hi Eve. You are like me in wanting to obtain all information available. I

agree with your last statement that the inter-use of the drugs is a certain

indicator! I am also in constant research mode looking for whatever I can

to find answers, examples, medications, and research pertaining to this

horrible disease. Aside from the various diseases causing dementia results,

the one major difference is where in the brain they attack. I am mortified

with what this disease can do to a person. I work as a P.A. at a Hospital

here in Minneapolis which has helped a little for researching some items,

but helping care for my MIL has afforded me the opportunity to learn so much

about the structure of these diseases. I have also come to better

appreciate the sciences involved which develop the medications used to help

deter symptoms (like Resparidol, Zyprexa..) and even progression (Vitamin E,

Aricept) that our loved ones may otherwise experience in a far worse way.

Knowing these medications have limits, and that the disease will carry on,

is still hard for me to digest. I feel if I am always on the look out, I

could run into something better that will afford my MIL a better quality of

life for a longer period of time. That is how I see anyway!

Please do share with me any information you come across. I am always

interested!

Thanks Eve.

> Diagnosis

>

> Network Blitz

>

> :

>

> Yes, there is a lot of medical information out there. I like knowing

> facts and therefore I read just about everything new that comes out and am

> signed up with about 8 medical sites that send me notices if anything new

> is found in neurological research etc.

> What I have found out is that there is lots of new information concerning

> Alzheimers, Parkinsons and LBD resulting from many thousands of autopsies

> of the brains. This has picked up in intensity during the last three or

> four years with a drive to find a cure for them all.

> What I have also found out is that they state over and over that for

> definite diagnosis the only way is from the autopsy of the brain. They

> have case after case where the patient was diagnosed [by top doctors in

> the field] as having Parkinsons, and the autopsy will show they had

> Alzheimers and LBD both. Or, they thought they were diagnosed as having

> Alzheimers and the autopsy showed they had Alzheimers and Parkinsons. Or,

> they had been diagnosed with LBD and they had Alzheimers. It goes on and

> on, and they repeat that it is the call of the specialist at the time from

> the information they can gather from the patient.

> The one position more and more researchers seem to be writing is that the

> three diseases are so inter-related and have so many symptoms and

> reactions in common, that if they find a cure for one, they believe they

> will have a cure for all three. The inter-use of the medications is one

> example that this may be true.

>

> Eve Fleming

>

>

>

>

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>The one position more and more researchers seem to be writing is that the

>three diseases are so inter-related and have so many symptoms and

>reactions in common, that if they find a cure for one, they believe they

>will have a cure for all three. The inter-use of the medications is one

>example that this may be true.

Eve Fleming

Eve

I wonder about this. Since I haven't been so good about keeping up I can't

describe this exactly right....Let's see....are there Lewy Bodies in

Alzheimer's. Are there those tangle things in LBD that are in Alzheimer's?

And what about plaques? If they've done enough autopsies they may have

really teased this information out.

In order to have any comprehension of this I'd have to read, not only about

the LBD but all the new stuff about Alzheimer's too. There's something

about Tau's , synuclein....Can you give any insight into any of this?

Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

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  • 1 month later...

When my Mom got the Dx it was within two days of being hospitalized. When

the psychiatrist saw Mom in the ER he told me he thought that is what she

had. He had treated Mom in April and she was back in the hospital in June

and that is when the psychiatrist told me what he thought.

Perhaps some of the test they did on your Dad, to rule things out, take

longer for results.

I sure it is just awful waiting.

I'll keep you and your family in my prayers.

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Kathleen,

It took quite a while for my mom to be diagnosed, but that was due to the

fact that originally her only complaint was a stiff neck. It started going

in a downward position. She also was having a little balance problem and was

getting very slow in her movements. I just figured old age was finally

catching up with her. Eventually they started treating her for " Parkinson

like symptoms " with Lapadova(Signmet) and the Hallucinations started. I

sometimes feel that the Medicine may have been responsible for the

Hallucinations because they were not there until she started medication.

Before that she was going to Physical Therapy but she missed lots of

appointments and really didn't do her exercises as much as she should have.

She told us for months that the doctor said she had a pinched nerve in her

neck and a bad spine. She did tell me that the Neurologist had her take

tests with repeating words and walking and observing her. She says she did

surprising well with the word test. (This doesn't' surprise me because to

this day she is still pretty sharp and remembers pretty good, if you talked

to her on the phone you wouldn't know anything was wrong) (Actually that is

changing some, she is probably about 10 percent worse than she has been in

the last 6 months.)After months of no improvement and worsening condition I

accompanied her and my dad on her visit to the neurologist. Things she said

just didn't make sense. She always did kind of play with words and misread

certain things she was told but the way she was feeling and how she was

acting just seemed so much worse than her usual self. She wasn't going out

much and was more or less secluding herself from people. She would say one

thing one day and something else the next. I made a list of her symptoms

from my perspective and gave it to the nurse in private to give to the

doctor before she went in. Once we went in to see the doctor he confirmed

that her condition was Lewybody. I feel he may have suspected it for awhile,

she was going to him for a few months but because my mom has a way of not

really explaining things well he wasn't sure. In your parent's case maybe

the doctors are not really familiar with LewyBody yet. So maybe they are

doing research to be sure. Also they probably want to rule out other

possibilities. Good luck, Shirley

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Kathleen

Nice to see your name in here again. It did take several dr. visits,

and several tests to diagnose my dad. The whole process was I believe a

few months. The neurologist had speculations, yet would not confirm

anything without extensive testing. Please keep us posted as to the

next doctor appointment, and anything going on with your dad. Best of

luck to you!

Sandie

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