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Jackie -

I'll echo what others have said, and what you obviously already know:  the
doctor is an idiot, unprofessional, etc., and is probably afraid you'll find
out he doesn't have a clue what he's doing.  You need a movement disorder
specialist.  Glad you've taken steps to find one.

Meantime, dyskinesia is a common response to Sinemet.  Not always "too much"
Sinemet - some people, like my husband, react to a small amount.  However, I
have some non-medical advice for you until you see the new neuro:  Sinemet
and other PD drugs aren't going to "cure" anything.  It's not something one
*must* take X amount of for Y number of days.  Many experienced PD
specialists, like my husband's neuro, encourage their patients to experiment
with the quantity of their meds until they find a comfortable amount.  PD
meds, after all, are only meant to improve quality of life, not to make it
worse.

I'd suggest that you immediately decrease the amount of Sinemet your husband
takes.  You might want to back off slowly, but I don't believe it would be
strictly necessary.  At some point he'll hit a balance that gives him the
benefit of the Sinemet with minimal dyskinesia.  He may also find, over time,
that when he's working hard or stressed, it would help to add, just for one
or two doses, an extra 1/2 Sinemet or whatever amount works.

When you see the new neuro, he may very well have some other options for your
husband to try, like one of the dopamine agonists - Mirapex, Requip, etc.
That might enable him to get by for now with *no* Sinemet, but if not, would
at least allow him to reduce his Sinemet dosage,  He should find then that he
can get adequate dopamine without setting off dyskinesias.

Again, I'm not a medical doctor, just a long-time observer of both good and
bad neuros dealing with PD.  Take my advice with a grain of salt, but it's
what Dick and I would do in the same situation.

Good luck.

Margie Swindler, cg for Dick 54/17

PS - I've never heard of Baclofen being used for PD dyskinesia before either.

<<
 In the two months since my husband was diagnosed he has gone from 2 Sinemet
 (25/100) to 6 per day.  He developed dyskinesia and his doctor prescribed
 Backofen 10mg three times per day to counteract the dyskinesia.  I questioned
 him about the 6 being too much and was that causing the dyskinesia and he
said
 No, the dyskinesia just means that the drug (Sinemet) is working.


 I know you folks aren't doctors, but what are your thoughts on this.  Many of
 you have already expressed concern about going from 2-6 per day in so short a
 time considering he has just been diagnosed and since I've been reading this
 list I don't recall seeing Baclofen mentioned, but I may have missed it since
 this is all new to me.  Is this commonly given to alleviate the dyskinesia?


 This doctor is really totally unacceptable.  The day he told my husband he
had
 PD he allowed him all of a 5 minute appointmet.  Told him he had PD, take
this
 medication it will take care of things and ushered him out the door.  Never
 allowed my husband to ask questions about PD or the meds or told him what to
 expect.  At first I sort of thought it may have been my husband's fault
because
 he isn't really one to ask a lot of questions.  But, the other day when I
 talked to the doc (I work at the same medical center) I had a small list of
 questions/concerns I wanted clarified and he totally brushed me off and
 wouldn't give me the time of day.  He was actually downright rude and totally
 insensitive.  Here he was prescribing a new medication and he wouldn't even
 tell me how often to take it or what we could expect it to do.  He kept
trying
 to hang up and I finally said, well will I find the instructions on how much
to
 take on the bottle when I pick it up at the pharmacy???  At that point he
broke
 down and told me to have him take 3 a day.   I couldn't believe it.  If this
 was a broken arm that would be one thing - it would heal, but this is life
 altering.  I just can't believe a doctor is this unprofessional.  There is
 another neuro here that has Parkinson's listed as his clinical interest so I
 tried to get an apointment with him and I couldn't get my husband in until
 DECEMBER.  Even though I work at a fairly prestigious medical center
 (Dartmouth-Hitchcock Medical Center) it has become quite clear that  I can't
 get quality care here and we are going to Boston (130 miles away).  I managed
 to get an appointment there in October so we will muddle along with these
meds
 and hope this new doc is better.  He comes highly recommended and if his
 secretary is any indication (she was an absolute sweetheart on the phone) it
 should go well.  I'm keeping my fingers crossed.


 Thanks again for letting me vent.  I'm trying to be very chipper around my
 husband and I don't want to complain to him about these things, but I just
have
 to get it off my chest.


 Have a nice weekend!!

 Jackie in VT

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