Jackie --
You aren't the only one to have a doctor like that .. or two
or three. We're looking into the Center of Excellence at UCSF since our
choice in (good) physicians is extremely limited where we live. We have to
have another (more intelligent and courteous) opinion. I'm no expert, but
an increase of medication like that sounds like way too much too soon to
me. My husband never has any dyskenisia unless he is overmedicated on
Sinemet and/or other meds. But mainly we've found that Sinemet is the
culprit in our case.
Carole :-)
Ted (51/45/43)
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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