Hello

[Guest guest]

Hello,

I've just discovered this group, and I'm glad to

finally find a place for support and (perhaps)answers

about MSA. My husband was diagnosed a little over

three years ago. Initially, he was having 'trouble

with his eyes', always squinting, light sensitive,

unable to keep them open. After going to a string of

different specialists, we were sent to a neurologist.

The doctor almost immediately suspected MSA just by

watching his movements, but was a little unsure

because of the eye thing. It turns out he has

blepharospasm as well as MSA, but since he has always

been a 'klutz', we didn't especially notice that his

movement was changing.

As it seems with everyone else, we don't know what

caused the MSA, (he does not have the bp drop that

many of you speak of)but he had a brain tumor about 25

years ago and was on anti-seizure meds for many years.

For those of you discussing funny SMELLS, dh says that

he always heard a strange sound and smelled an odd

smell before each seizure.

is no longer able to work as things take so much

longer for him to do, and he does tend to fall now and

again. This is frustrating for someone whose brain

still needs to be occupied, as I'm sure you all know.

ABout six months ago the doctor started him on a low

dosage of mirapex, I'm not sure that its accomplishing

anything, I think I still see deterioration. Your

discussion on VIOLENT DREAMS peaked my interest as

within the last few months he has experienced several

which involved screaming, thrashing, moaning and

whimpering. One he remembers had him back in VietNam.

His snoring and the quality of his sleep has also

become worse, although sometimes he will sleep for

over 12 hours straight.

Generally I am impressed with how well he deals with

his problems. He is using a cane when we leave the

house, but around the house he manages well. We have

installed hand rails on both sides of the stairway,

and so far that works for him. The bath tub is a

challenge, but we have a stall shower, and we have a

shower chair for when that becomes neccessary.

From time to time, when things seem worse, he mentions

moving bed, tv, etc. into one room so he doesn't have

so much difficulty. Usually, all I have to do is ask

if he really thinks its time for that, we'll do it

right away and he decides to tough it out a little

longer.

I have been able to learn a little about the disease

from links on the internet, but they tend to talk

statistics, not real people experiences. One source

says something like 40% are in wheelchairs within 5

years- has this been the case for any of you? Then

there is the really frightening one that says life

expectancy from diagnosis is anywhere from 6 to 9

years (average), but this depends on which article you

read. How long have most of you been dealing with

this disease?

I really look forward to hearing from you, when I made

an appointment for myself with the neurologist just to

discuss MSA I told him I just didn't understand it

very well, he said, neither do the experts, there is

just so much still unkown. But you all are

experiencing it, so I know you can help us through

this.

Thanks,

Gail

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Gail

gsouthwick@...

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