Hi Carole,
It's been ages since I heard from you, but then I haven't been posting
or writing much.
I've started back on Permax. I was on it before but on a very low dose.
In February I came down with the flu...a bad one that kept me in bed for
three days. After that my PD and meds went completely out of whack. I
told both my family and my then neuro. I don't know if it was just a
coincidence or what. Of course the docs didn't know either.
When I saw my neuro in May, after some discussion, he decided to put
me on Requip instead of increasing the Permax. Around the 3 - 6mg
point I told the neuro that I didn't think Requip was working and I felt
generally unwell most of the time. He said "we won't call it a failure
until we hit 16mg a day. Well, we it hit 16mg and went up to 18mg and
finally 20mg. By then I was having hallucinations, panic attacks and the
muscle spasms were just a bad, if not worse.
He finally weaned me off Requip, but then during my last appointment
(with meds working beautifully) he said he couldn't give me anything
because I was doing so well on just the Sinemet.
Both my husband and I told that the Sinemet only lasted for two hours
and then the rigidity would set and the pain would start all over again.
However, he insisted that the spasms were not PD related and then said
we were to my Sinimet in half and come back to see him in two weeks. I
knew I couldn't possibly function or stand the pain that would surely be
there.
Fortunately I was able to contact another neuro and am now under their
care. Things 'seem' to be improving but it's a slow process titrating to
the level where they want me to be.
I hope things improve for you. Just remember, they may be the doctors
and have all the credentials, but they don't know your system as well as
you do.
Take care,
Judith
BTW--I mailed Dr. Lieberman's article to the neuro. Perhaps it will save
some other poor soul from going through what I went through.
>>Have had an agonizing similiar experience. Find I need the
Sinemet for strength, but one of the agonists for muscle
spasms. I sometimes wish I could wish PD on several
neurologists I know for just a day. Walk a mile in my
shoes, etc.
Carole<<
--
Judith Richards, London, Ontario, Canada
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