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Hi all--

Marcia Hutcheson asked about info on MSA, which nudged me to report on my
trip to Baylor Med Center's Mvmt Dsrdr Clnc in Houston last week.  Dr.
Jankovic and his adjunct, Dr. Hanna, were quite thorough in their
examination  (I had gone there to get a second opinion on whether I had
idiopathic PD or MSA as the first specialist said).

Before we went, I gathered as much info as possible on MSA and the more I
read the more I didn't feel I fit the profile--and the more I realized
how incredibly hard it is to differentiate.  But for those who want to
study up, I'd first recommend asking John C to send you the long study
reported in the archives by Jancovic and another (I've loaned out my copy
to a support group friend so can't check the name); it details all the
"look-alikes" and gives the  main symptoms of  each in easily read graphs
and  the relative percentage  of occurrence for them.  (John C, I hope
your having fun but the  leaves are reaching their peak here in OK; don't
you miss them? just kidding)

MSA encompasses three diseases:  the original multiple systems atrophy
(called Shy-Drager syndrome, a name losing favor) which is a progressive
shutdown of the autonomic system (like Marcia's dad's inability to
swallow or control body temp in extremities) especially blood
pressure--orthostatic hypotension is  main symptom; olivopontocerebellar
degeneration (OPCB) which strikes the cerebellar functions; and
striatonigral degeneration which has parkinsonism symptoms.  MSA is often
misdiagnosed as PD or progressive supranuclear palsy.  These three types
of MSA share the fact that the area of the brain affected is not the same
as that in PD.

I won't bore you, but their symptoms, especially SNG's, overlap PD's to
large extent.
MSA patients don't respond to L-dopa nearly as well as PWPs.  I kept a
diary after I was told I had MSA in July and realized Sinemet was helping
me far more than I realized--or had indicated to my regular neuro and the
first specialist.  It had been held out to be something that would help
me be almost as good as new at least for the first few years (Dr.
Duvoisin, at a seminar I attended 3 mos. post diagnosis, was positively
euphoric about it and lit into several doubting Thomases like myself who
didn't think it was quite akin to sliced bread).  Now I remembered all
the list folks like Barb M. who can't take large doses of Sinemet
either--we can't all be classified as "other."

I think Dr. Jankovic realized that the symptoms I cared about most (soft
voice and articulations among them) were not my worst but they were the
ones Sinemet doesn't help as much as it does others.

Bottom line: he said I had your garden variety PD, albeit with a few
anomalies like diphasic distonia (sound familiar, Ida?).  He started me
on Mirapex, suggested I get another MRI to make sure the cyst hadn't
reappeared and sent me on my way.   But it was a revelation to learn how
hard it is to tell the difference, and who knows? the dx could be wrong;
I tried to be as accurate as possible and he seemed to be weighing
heavily the one-sidedness of the PD and the visible signs of my walk etc.
more than my recollections, so I trust he is right.   I'd recommend him
to anyone wanting a "definitive" answer--heaven knows he's seen enough of
all kinds to be a good judge.

Didn't mean to ramble--sorry.

Kathy Kunz (62/3+, symp5)
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