Dear Mary: I was diagnosed at Mayos in 1992 after 3 instances of
misdiagnosis. I am now 62. I was lucky enough to get into a Ropinerole
study group at Colorado Neurological Institute in Denver (Movements Disorders
Center) at Swedish Hospital. My doctor is Dr. Christopher O'Brien, a
neurologist. You could not get into a study group if you had been on sinemet
for more than 30 days.
I couldn't decide whether to do it or not and so I asked a psychiatrist
friend and, after looking into it, told me that he would get into the group.
He opined that Sinemet put extra pressure on the substantia nigra to produce
dopamine and ultimately wiped it out and that this was when the freezing
would develop because there was no dopamine whatsoever being developed by the
substantia nigra. He felt that Ropinerole would not do this and that
Ropinerole had less side effects than Permex. That theory still makes a lot
of sense to me.
Ropinerole (8 mg, 7mg, 7mg) plus Eldepryl (5/5) has been a wonderful
drug for me. I was able to continue to obtain it after the study on a
compassionate basis. I was considered "mild" when first diagnosed and am
still "mild"+ I have lost a great deal of my taste and also smell. Tremor
is a little worse in left hand. No side effects that I can tell. I am
probably now diabetic on the basis of number of readings over 200 -- but I
had higher readings for years and so I do not blame Ropinerole for that.
Perhaps it has lowered my blood pressure a bit.
I hope it gets on the market soon. I will be hapipy to answer any further
questions. Because I have done so well, I have not been any more diligent
about being sure of the year I was diagnosed at Mayo's than I am of the date
I quit drinking and became a recovering alcoholic and not a practicing one.
(17 or 18 years). I am going to figure out the date for Mayo's.
