Subject: Re: RE: Newbeee

[Guest guest]

Bill:

You don't have to be sorry. We all know that with the MSA everything is different just about everyday and that is from hour to hour also. I wish we did have a handy dandy guide, that would mean we have more answers, but until then all we can do here is try to help and learn, and teach other what we have learned and hope that it will help them the same as it has us. I've seen where so many here have done really well and then just pass away . Hard to say what will be, just have to take each day one at a time.

HUgs

Vera

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Subject: Re: RE: Newbeee

Vera,

Sorry if I implied that was a standard progression as it is NOT. There

is NO standard progression with MSA. There do seem to be stairstep

progressions most of the time with sudden bumps which may come back a

little (probably caused by infections) and periods of little change.

But with Charlotte she had some minor problems from 1986-1990

undisgnosed as anything specific. In 1990 she got a dx of Parkinson's

which went fairly well with Sinemet until 93-94 when they suspected

OPCA. Balance was gone in 94 and she had to quit work DX at that point

was probably PD+. In 1995 she was diagnosed as MSA at NIH and got SSDI

- also went into the w/c full time. No real problems until the

infection in 1998 and when that cleared up, no major problems until

September, 2001 which cleared up by late October and she had a

reasonably good November until she died.

Yes there can be plateaus of as much as three years (maybe more), but

they are not predictable. With the MSA-C most people seem to be in a

wheelchair by the 5th year after a dx of a movement disorder. BUT as

you know getting a dx has been tricky for many people, so there is no

handy dandy guide to how it is going to work on any single patient. We

have had people die in two years (very few), but we have had people live

twenty years. The average still seems to be about ten years from a

diagnoses of a movement disorder - but 2 to 20 seems to be the range.

Careful watching for infection, exercise and attention to liquid intake

can prolong quality of life and life itself, so list members do have an

advantage. We all recognize symptoms of infection and there are always

a dozen people on the list who scream "it's an infection", when we hear

symptoms.

Have a hug, Bill