hi mary

At 16:19 1998/11/19 EST, you wrote:
>I have been off list for some months due to problems.
>There is now a question as to whether I even have PD.

6 years after 'diagnosis' ? yikes

>I am taking 1-1/2 Sinemet regular 10/100 & 1/2 SinemetCR 50/200
>... at 8:00 am, noon, 4:00 pm, &8:00 pm.

in other words, four times a day, you are taking:
1 x 10/100 = 10 carbidopa + 100 levodopa
1/2 x 10/100 = 5 carbidopa + 50 levodopa
1/2 x 50/200cr = 25/100 less 25% for cr = 18 carbidopa + 75 levodopa

ergo
each dose totals: 33 carbidopa + 225 levodopa

ergo
each day totals: 132mg carbidopa + 900mg levodopa

in addition, you mention
>...80mg reg. Verapamil 3 times per day for migraine,
>...30mg Paxil for anxiety/depression.

how long have you been on this regime?
how does this regime work for you:
for instance, do you run 'out of steam' shortly before
your next sinemet time, say at 3:30 pm?
or do you develop dyskinesia instead?
or both? !

>I'm going to go to Mayo, & the doctor there wants me
>to taper off the Sinemet entirely over a 2 week period,
>be off of it entirely the 3rd week,  & see him the 4th week.

it seems to me that this is kind of long and drawn out
your pd seems a bit similar to mine
and i surely would not want to be without sinemet
for a day, let alone a week!

>My ?PD seems to be the rigidity type, as there are times
>when I'm at the end of a dose & can't move my fingers enough
>to type.

sounds like rigidity

>There is numbness on my left side, which gets worse
>& spreads to my right side occasionally.

could be from muscle rigidity or cramping

>Sometimes my left hand "claws", left big toe
>sticks up, other toes dig into the floor.

sounds like dystonia

>Sure sounds like PD!

yes, indeed! to me too!
how often do these symptoms show up?
at the end of every dose?
once a day?
once a week?

>But my gait is always OK when I see the doctor,
>& that's what has the docs questioning.

aha!
has he not asked to examine you over, say, a five hour period?
so that he can observe your 'on' and 'off' symptoms?

pd can seem like a chameleon
it needs to be viewed as a movie not a snapshot

i would have hoped that he would understand this;
motor fluctuations are a basic problem
with pd and fine-tuning of its meds

>The Sinemet helps my symptoms.

i have always understood that this
was the strongest confirmation of pd diagnosis
in cases of uncertainty

>It seems they are wondering whether my problems could
>be the side-effects of other meds, plus anxiety.

ooh!
side-effects can certainly mess any of us up
but the anxiety issue
['there, there, dear - it's all in your head']
is a sore point with me
[another story]

>I'm afraid! My worry is that I will be so stiff & miserable.

based on the way you've described your motor fluctuations
i would say that your fears are well founded
if you follow the suggested schedule

>I understand that that's the length of time needed
>for the Sinemet to be out of my system.I remember
>something from the past about the short term effects
>of Sinemet, & the long term effects.

my understanding is that
there is some residual effect from sinemet cr
but not so much from instant sinemet;
the half life of sinemet cr is approx. 4 hours
as compared to approx. 2 hours for instant sinemet

>I am concerned, too, because I don't
>have much of a support system nearby.

i would be extremely concerned, if i were in your shoes

the concept of a 'drug holiday' as a sinemet management technique
has changed radically over the past few years

it is not something to take lightly at your stage of pd
and is generally recommended ***only ***
under 24 hour hospital care

otherwise
it could be dangerous
more like the 'holiday from hell'
after your totally unmedicated state shows its true colours

>I don't know exactly what to ask you folks,
>but would appreciate any input you could give
>me on what to expect, and maybe how to cope.

when 'off'
can you walk?
can you feed yourself?
can you care for yourself?

if you can't do any one of these things,
i would strongly suggest saying so very clearly to your doctor;
i suspect [and hope] that he doesn't fully appreciate
the extent of your pd disability
if he has only seen you
in the 'on' state

please let us know what happens

janet

janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada
http://www.newcountry.nu/pd/members/janet/
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