Ellen,
There are two movement disorder specialists (MDSs) with the Wisconsin
Parkinson Foundation (WPF)* I was not pleased with the treatment I received
from them last summer, and I will discuss that below. Due to the problems
with the MDSs at the WPF and the significant fact that my supplemental
insurance would not provide coverage for the MDSs at the WPF, I shifted to
Dr. Karen Blindauer, a MDS with the Medical College of Wisconsin and
Froederdt Hospital in Milwaukee. There is also another MDS in Milwaukee, an
older male doctor (I forget his name), who works with Dr. Blindauer. I have
no knowledge as to neurologists in Milwaukee.
I am very pleased with Dr. Blindauer: she is young, dynamic, and
competent. She listens, and she answers all my questions She confirmed the
diagnosis by the MDSs at the WPF that I have drug-induced PD, and although
she initially was quite adamant that I not take the drug, or any other drug
like it, which probably caused my PD, she has come to realize that there has
to be a balance between my psychiatric and movement disorder problems, and
the medications prescribed for each, and she is working with my local Green
Bay neurologist and my psychiatrist to reach that balance. Unfortunately she
also has diagnosed me with something new, axonal sensorimotor polyneuropathy,
which (she says) is outside her area of expertise as a MDS but which was not
diagnosed by any of the many neurologists and other MDSs I have seen in the
past six years. I have taken either my mother or my sister to each of my
appointments with Dr. Blindauer, and they both have been impressed with her.
I have not tried to contact her after hours, or on an emergency basis, so I
don't know how available she is at those times, but I was initially given an
appointment three months away but her clinic nurse listened to my pleas for
an earlier appointment and called me when a cancellation occurred in a few
weeks.
I was not pleased with the MDSs at the WPF because they were not
available after hours; one changed a scheduled appointment time without
notifying me; they continually bashed the Mayo Clinic and the MDS there who
diagnosed me with PD, my local neurologist, and even my orthopedic surgeon
who did my hip and knee replacement; and they totally, totally disrupted my
life and my medical care. My problems with the MDSs at the WPF started when
the first MDS I saw told me that I had drug-induced PD and that the PD would
go away when I stopped taking lithium, the psychotropic drug, which was
causing the PD. This MDS took me off of all my Parkinson's and psychotropic
medication without any titration and without any hospitalization. When I
came in for my next scheduled appointment, he told me in person that he was
not going to see me because he was leaving for the rest of the day. His
patients were to have been called about his change in his plans, but I was
not called, and I had made the 2 and one-half hour trip from Green Bay, by
myself, to Milwaukee when I would have simply rescheduled the appointment if
I had been notified he was not going to be there. He was rude, he did not
apologize, and he did not ask me how I was.
I was seen that day by the second MDS, who did have the grace to
apologize for the appoinment mixup, but who, in my opinion, could not know or
appreciate what I was like prior to the discontinuation of all those
medications. He was not concerned about all the problems and complications I
was having from stopping the medication. He told me that diagnosticly I had
to have a special kind of MRI to rule out Wilson's Disease because the
records from the Mayo Clinic indicated that the MDS there diagnosed me with
PD before receiving abnormal lab results for the tests for Wilson's Disease.
I told him that I was more concerned about the consistency, and continuity,
of my medical care at the WPF rather than whether or not I had Wilson's
Disease and my recollection was that the MDS at Mayo told me the results of
the blood tests for Wilson's Disease and that the opthamologist at Mayo told
me the results of her exam, which definitively excluded the possiblity of
Wilson's Disease, prior to the official pronouncement by the MDS that I
"probably" had PD, that my case very, very difficult diagnostically, and that
sinemet would be prescribed to determine if the diagnosis for PD was
appropriate. I suggested to this second MDS at the WPF that the blood tests
for Wilson's Disease be repeated; these blood tests were repeated and they
were normal. I had a second office appointment with this second MDS, but the
complications from the abrupt change in my medication regime were
overwelming.
I was having significant problems, primarily psychiatric problems but
also neurological/PD problems, such as severe jaw spasms, increased
difficulty speaking, and severe dystonia in my feet and legs. There were
many phone calls back and forth between me and both MDSs at the WPF. Calls,
and most alarmingly after hours or emergency calls, were not returned in a
timely manner or were not returned at all. The message at the WPF referred
me to the Mt. Sinai Hospital switchboard operator who said she would give my
message to the MDSs if they called in, but she had no means of contacting the
MDSs directly and no one was listed on call. I questioned the office
receptionist as to why the MDSs were not returning my calls when I was in
obvious distress and my local doctors and local emergency room would not
provide treatment/would not interfere with the treatment from the WPF MDSs.
Medically, neurologically, psychiatricly I was a mess. There were turf wars
among the MDSs, my Green Bay neurologist, my psychiatrist, and (believe it or
not) my dentist. Finally the first MDS put me back on the sinemet, and it was
agreed by the MDSs and myself that I would have a third office appointment
in Milwaukee with myself and both MDSs. I took my sister, another attorney,
along as my driver, caretaker, and legal representative to the appointment.
I was examined by both MDSs and both proclaimed me to be "better." The first
MDS stated that the stiffness and cogwheeling in my right arm and shoulder
could still justify a diagnosis for PD, and that I obviously had a
predisposition to having PD, and I would need to be monitored, but that, by
Christmas, I would be better and better and better. My psychiatric issues,
to which I gave first priority, were ignored.
I first saw Dr. Blindauer in October, and she, of course, had no idea
how I was before all the medications were stopped in June. I wasn't better
at Christmas.; I'm not better now. I have now seen Dr. Blindauer three
times, and she says I am "not worse," not better, as she had originally
expected, but not worse. She says that it can take up to a year for the
receptors in my brain to respond and to realize that the lithium, which
suppressed the dopamine, is no longer there. It has been nine months, and,
although I am arguable "better," I still have many PD symptoms and, more
importantly, I am not stabilized psychiatricly. I am on the last drug which
may substitute for the lithium, but I am having intolerable side effects.
This drug has been stopped and now restarted to be titrated more slowly in
the hopes that the side effects can avoided. It is, in effect, my last
chance. It is understood that, if this does not work, I will be prescribed
again the lithium which all three Milwaukee MDSs say caused my PD.
I think the lithium, and my other psychotropic drugs, have damaged my
brain by suppressing the dopamine for such a long time, 25 years on lithium,
a total of 31 years on psychotropic drugs, and that the receptors in my brain
probably can never fully recover. The causal connection between lithium and
PD was not confirmed scientificly until 2001 with a study which involved
rats. The length of time on lithium and the individual's sensitivity to
lithium determine how the receptors in the brain respond to the stopping of
the lithium. There was probably no way to know how the receptors in my
brain would react/recover, if at all. The possibility that the PD would go
away, or that the progression of the PD would be slowed, or that the severity
of the PD symptoms would be reduced were such beautiful dreams, such
hoped-for dreams, that I was willing, despite my better judgment, to stop all
my medications at one time, cold tukey, and without any hospitalization or
other precautions taken. I put my psychiatric health, even my life, in
jeopardy. I didn't know that the past nine months would be hell, and I
didn't know that I would end up exactly where I started. I wanted to
believe those dreams were possible. I wanted to believe those who said that
the PD would go away. Katie
* I put in a request to Dr. Lieberman on "Ask the Doctor" re: a MDS in my
geographical area, and he recommended the first MDS I saw at the Wisconsin
Parkinson Foundation. WPF is affiliated with the National Parkinson
Foundation which employs Dr. Lieberman.
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