----- Original Message -----
From: Greg Sterling <[log in to unmask]>
To: Nigel Harland <[log in to unmask]>
Sent: Saturday, August 25, 2001 10:23 AM
Subject: Re: Dystonia vs. Dyskinesia


> Nigel,
>
> Every PWP reacts differently to the disease and the medications used to
> control it.  There is a big difference between toe curling, dystonia and
> dyskinesia.  Ivan and I both suffer from wearing off effect dystonia,
which
> is severe involuntary  cramping and twisting of muscles due to lack of
> levadopa.  Dystonia is part of the disease process in our cases, but may
not
> be in others.  It is painful, and has no comparison to toe curling or
> cramping.  Dyskinesia is attributed to prolonged sinemet use, but should
not
> be confused with dystonia.
>
> Greg
> 48/35/35
>
> ----- Original Message -----
> From: Nigel Harland <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, August 25, 2001 4:21 AM
> Subject: Re: levodopa side effects...need help
>
>
> > Hello,
> >         I have to disagree with Ivan on this one, it has been my
> experience
> > that Toe curling, and dyskenesia in general are definitely side effects
of
> > dopamine,(Sinemet or Madopar) and are not symptoms of the disease
itself.
> >      Despite having had PD for 12 years now I am fortunate ?? enough not
> to
> > need any dopamine to get me through the night, I usually take my last
dose
> > at approx' 5.30 pm, not taking any more until approx' 8.30 am the
> following
> > day. I experience no toe curling or dyskenesia throughout the evening or
> > during the night and it doesn't re-appear until after I have taken my
> first
> > dose of dopamine the following morning, then subsequently with the
uptake
> > and wearing-off  of each dose. I would also add that in my case toe
> curling
> > and dyskenesia have been almost totally eliminated by changing my
dopamine
> > agonist from Pergolide to Cabaser ( Cabergoline ).
> > Regards,
> > Nigel, age 46,  diagnosed at 34
> > ----- Original Message -----
> > From: "Ivan M Suzman" <[log in to unmask]>
> > To: <[log in to unmask]>
> > Sent: Friday, August 24, 2001 9:00 AM
> > Subject: Re: levodopa side effects...need help
> >
> >
> > > Dear Barbara.
> > >
> > >    I HAVE SYMPTOMS , not side effects, in my toes.
> > > Without  medications like Sinemet, or its generic
> > >  equivalent, I would probably be dead.
> > >
> > > Greg Sterling mentions other PWP's with levodopa
> > > causing relief from toe curls.  Count me in that group.
> > > I believe that these curls are the underlying disease
> > > itself, advancing in visiibility and causing more pain
> > > as it progrsses.
> > >
> > > Ivan Suzman
> > > 51/39/36
> > >
> > >
> > > On Thu, 23 Aug 2001 20:46:06 +0100 barbara <[log in to unmask]>
writes:
> > > > Hello Everyone,
> > > >
> > > > My neuro said my pain from cramping foot/leg and dystonia are side
> > > > effects
> > > > of levodopa.
> > > >
> > > > So...now the side effects are worse than the parkinson symptoms.
> > > >
> > > > I have tried all the agonists, they all gave me side effects so
> > > > badly neuro
> > > > took me off each one.  Mirapex was the last one I tried, feet and
> > > > legs
> > > > swelled until small blood vessels broke, feet wouldn't fit into
> > > > shoes.
> > > >
> > > > Now neuro says since all pd drugs have made me worse than before I
> > > > took them
> > > > I should consider DBS surgery.
> > > >
> > > > I could use some encouragement from anyone who understands the
> > > > sensitive to
> > > > pd drug person.
> > > >
> > > > There must be someone out there like me.
> > > >
> > > > I was diagnosed 6 years ago, I am 53.  I took sinemet during the day
> > > > 100mg X
> > > > 3. I could see no improvement in my pd symptom of right side
> > > > tremors.  Neuro
> > > > said I was under medicated because he could see my tremos,
> > > > increased my
> > > > dosage and tremors stopped while medicated.  After 6 months side
> > > > effects
> > > > appeared and agonists were tried, each leaving me with more pd
> > > > symptoms,
> > > > more tremors and then stiffness.  My progression after increase in
> > > > levodopa
> > > > and trials of agonists and other pd drugs has been very dramatic.
> > > >
> > > > I now feel ill now when I take levodopa, nausea, headaches,
> > > > weakness, mental
> > > > fog, depression.  When I am off levodopa I am stiff with severe
> > > > painful
> > > > cramps, if I am strong enough to keep moving through out the day I
> > > > can
> > > > control some of pain because cramps start when I don't move.   When
> > > > I am off
> > > > levodopa I feel happier, no nausea, headaches, mental fog or
> > > > depression.
> > > > Just have no use of right hand and drag right foot unless I stop
> > > > moving..then pain begins..  Tried the anti-cholerigenic drugs....not
> > > > helpful.
> > > >
> > > > I no longer take levodopa during the day unless I must have more
> > > > mobility
> > > > for traveling, dentist, etc.  When I take levodopa during the day I
> > > > have a
> > > > difficult time breathing and when it wears off the cramping is much
> > > > worse.
> > > >
> > > > Since I developed the side effects I cannot get to sleep with so
> > > > much pain.
> > > > Neuro first put me on 25/100mg CR at night increased to 50/250mg CR
> > > > ....still I would wake up with severe cramps when drugs wear off.
> > > >
> > > > I am forced to take levodopa at night to stop cramps and sleep in
> > > > between
> > > > doses...when cramping begins from drug wearing off I must take
> > > > another
> > > > tablet and endure great pain until I switch on, can relax and sleep
> > > > a bit
> > > > more, must have crackers or applesauce to stop the nausea.
> > > >
> > > > I felt so good under or non medicated with no side effects.  Did not
> > > > realize
> > > > then how lucky I was.
> > > >
> > > > I have tried calcium, magnesium, vit E, muscle relaxants, NADH,
> > > > selegiline,
> > > > sleeping tablets, acupuncture, meditation, massage, etc  Searched
> > > > the pd
> > > > archives and internet groups for answers.
> > > >
> > > > I know 2 other pwp's like me they medicate 24 hours a day and can do
> > > > so
> > > > without nausea etc.
> > > >
> > > > If there is ANYONE out there who understands.....may be going
> > > > through what I
> > > > am....PLEASE write to me via e-mail address.  I cannot sit long
> > > > enough to
> > > > receive digest.  I have to stand and shift feet as I type this.
> > > >
> > > > I can see what I wish I had done.....cannot change the past.....how
> > > > do I
> > > > continue this way.  I don't like taking levodopa to stop side
> > > > effects, I
> > > > wish I could take it for pd  symptoms only.
> > > >
> > > > I have not had a good nights sleep since the side effects began.
> > > >
> > > > I feel desperate......am I a hopeless case?
> > > >
> > > > Each day and each night becoming more difficult.  Feel too weak for
> > > > surgery.
> > > > Still retaining water since Mirapex.....may have caused some kidney
> > > > weakness.
> > > >
> > > > Sorry this message is so long......
> > > >
> > > > Appreciate any encouraging replies....like a cure is coming soon...M
> > > > J Fox
> > > > says within 10 years....
> > > >
> > > > Thanks for listening...
> > > >
> > > > Barbara
> > > >
> > >
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