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Hullo everybody

For nine years I thought I had PD and was treated for it in the usual way
with gradually increasing amounts of Laevodopa so that approximately one
year ago I was taking eight Sinemet10/100 /day plus 2mg pergolide. I was
without any tremor but my handwriting and speech were hopeless. I also
suffered from slowness and rigidity. In addition, right from the early
days, I have had problems with my eyes closing. No, I wasn't nodding off.
To me personally this has been almost the worst feature. I understand
that this is not a usual feature of Parkinson's Disease but it can
occur.

And then, just more than a year ago I started to fall. And it hurt! I
discussed the possibility of having a pallidotomy with my
neurophysiologist. He said yes but first I would have to be assessed  by
my reaction to apomorphine.

But apomorphine, at the highest concentrations normally used, had no
effect on my parkinson symptons. This could only mean that I did not have
true Parkinson's after all. Instead I had something called 'Multiple
System Atrophy'(MSA)

This had immediate implications for my medication for it threw doubt on
the value of the fairly large amounts of Sinemet which I was taking. (I
had neve been convinced about the value of Sinemet which had been
gradually increased more as an act of faith than anything else.) So I
stopped taking Sinemet and for a whole month did without it completely. I
suffered no ill effects as a consequence but have now reverted to 400mg
Sinemet /day plus 2mg pergolide because I believe my balance is better.

I must admit to feeling like a voice crying in the wilderness. How common
is MSA after all? Is it commoner than we think? From your own knowledge
are you sure about the value of laevodopa in your case? Are you all
convinced that dopa is the next best thing to sliced bread? OR DO SOME OF
YOU, AS FAR AS YOU ARE CONCERNED, LIKE ME, HAVE YOUR DOUBTS?

Enjoy yourselves

Jack Tibbs

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