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
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn