Parkinson's often misdiagnosed
Neurologists submit guidelines to identify movement disorder
By Cheryl Clark
UNION-TRIBUNE STAFF WRITER
April 3, 2006
As many as 200,000 of the estimated 1 million people in North America who
learn they have Parkinson's disease, a progressive disorder marked by
tremors and slow movement, may be misdiagnosed because the condition
requires special expertise to recognize and treat.
They instead may have ailments with a far better prognosis, such as actress
Katharine Hepburn's head tremor, or recurring strokes that may be treatable.
But typically, they have diseases much more serious and aggressive than
Parkinson's, such as supranuclear palsy or multiple system atrophy.
NANCEE E. LEWIS / Union-Tribune
Dr. David Song conducted tests on Parkinson's patient Ann Maier last week at
UCSD's Thornton Hospital. Maier frequently monitors the disease's
progression.
Likewise, the academy said 5 percent to 10 percent of people who complain of
tremors and stiffness have Parkinson's, but are told they have something
else, such as arthritis.
"From my experience, (these) patients are often told they have tendinitis,
frozen shoulder, or 'you're just getting older, dear,' (or) 'You slept on
your arm wrong,'" said Dr. Janis Miyasaki. "I've heard the most amazing
things."
This key message about misdiagnosis was issued today by the American Academy
of Neurology as part of its first comprehensive set of recommendations to
doctors and patients on how to detect and treat Parkinson's disease.
Miyasaki was one of 20 movement-disorder neurologists who wrote the
guidelines.
The recommendations, published as four reports in the journal Neurology,
were released as 10,000 neurologists and others attended the academy's
annual meeting at the San Diego Convention Center. The conference will last
through Saturday.
"It's important for patients who have these symptoms to see a neurologist,
and, if possible, a movement disorder specialist, because we have more
experience in diagnosing these problems," said Dr. Oksana Suchowersky, lead
researcher for two of the papers and director of movement disorders at the
University of Calgary in Canada.
Parkinson's disease
Movement problems occur because of reduced levels of dopamine,a
neurotransmitter that enables smooth and coordinated musclemovement. Signs
that such a deficit is causing Parkinson's include:
 Patient improves after taking the drugs levodopa or apomorphine.
 Shaking or tremors affect limbs on only one side of the body.
 Walking turns into a shuffle.
 Movements are slow.
 Patients experience problems with balance.
 Handwriting becomes small and cramped.
 Ability to show facial expression is diminished.
 Speech becomes soft andmuffled.
 Symptoms progress steadily, not rapidly.
Source: American Academy of Neurology

Far too many people are being wrongly diagnosed by family practice
physicians or other doctors who don't see Parkinson's disease that often,
said Suchowersky and the other reports' authors.
Ann Maier, 60, of Escondido is an example of how Parkinson's can sometimes
be misdiagnosed. Maier, a high school gym teacher for many years, told her
primary care doctor that her right arm had gradually started to shake.
"It wouldn't swing properly," she said, "and my handwriting changed so much.
I couldn't read my own hen-scratch grocery list. And I was walking
differently. But one side of my body was affected more than the other."
During several visits over 18 months, she said, the doctor blamed her
problems on a condition known as benign essential tremor.
It took two years before she was referred to a neurologist, who diagnosed
her with Parkinson's. Now, her disease is well managed with appropriate
drugs, and she sees a neurologist to frequently monitor Parkinson's
progression.
Parkinson's symptoms
While the guidelines might raise suspicion among patients that they won't be
properly diagnosed, there is probably no need to switch doctors as long as
the one providing treatment is a neurologist, Miyasaki and Suchowersky said.
"But you can ask your neurologist if he or she is sure of the diagnosis. And
any doctor who treats Parkinson patients should re-review their patients'
histories as they follow them every year or two," Suchowersky said.
About 50,000 people are diagnosed with Parkinson's each year based on
clinical symptoms, whether they respond to drugs or show signs of the
disease's progression.
"Baby boomers are aging, and with that, we're going to see more Parkinson
disease," said the academy's guidelines director Dr. William Weiner,
chairman of neurology at the University of Maryland School of Medicine in
Baltimore.
Because a large percentage of patients with diseases that mimic aspects of
Parkinson's have a more dire prognosis, he said, it's important that people
be diagnosed correctly so they can make appropriate social and financial
plans. For example, they may need a wheelchair or a nursing home sooner.
"It's important for people to have some notion of what lies ahead," Weiner
said.
There is no blood, imaging or spinal fluid test that can detect the disease,
which can only be identified definitively by an autopsy. The condition can
occur in people as young as 30, such as actor Michael J. Fox, but usually
appears after age 60. It is marked by loss of dopamine-producing neurons in
an area of the brain called the substantia nigra, which shows up as pale
instead of dark in an autopsy.
Degeneration of brain cells manifests first with trembling on one side of
the body, such as the hand or leg when it's at rest. Attempts to move appear
hesitant because limbs feel rigid. Gradually, the disease progresses to
create a stooped posture and normal walking becomes a shuffle. Facial
expressiveness eventually disappears and patients begin speaking in a voice
that is much softer than before.
Parkinson's disease is not considered terminal, but its progression can
result in pneumonia or urinary tract infections, which can be fatal.
Latest research
The academy's four-part guidelines emphasized these points:
 If movement problems don't lessen significantly with doses of the drug
levodopa, sold under the brand name Sinemet or apomorphine, other neurologic
disorders should be strongly considered. However, 30 percent of patients who
do respond well to levodopa actually have a disorder other than Parkinson's.
Levodopa restores levels of dopamine in an area of the brain that controls
movement.
 Levodopa does not increase progression of Parkinson's disease, as many
people have feared.
 Unlike many mimic disorders, Parkinson's can impair a person's ability to
smell. The problem can be measured with olfaction testing.
 Falling as an early symptom and slowness or stiffness on both sides of the
body suggest a condition other than Parkinson's.
 There are no data showing that nutritional supplements such as vitamin E
protect against Parkinson's progression.
Some clinical trials to test promising Parkinson's drugs require that
patients not use any other medications or supplements that might confuse the
studies' results. But many patients don't want to stop taking them, and that
has made recruitment for clinical trials especially difficult.
 Anxiety and depression often are interwoven with Parkinson's as a result of
changes in levels of certain neurotransmitters like dopamine.
"Patients very often do not bring this up to the doctor, and doctors often
don't bring it up," Weiner said.
Treatments such as anti-depressant drugs do not interfere with other
therapies used for the disease. The guidelines said that for some patients,
the surgical strategy known as deep brain stimulation may have benefit.
 Movement difficulties may be improved with regular exercise and physical
and speech therapy, which often aren't considered for Parkinson's patients.
 Many drugs besides levodopa can improve symptoms.
 It's important that physicians monitor their patients' illness over the
years to make sure their Parkinson's symptoms don't change.
Hoping for change
The extensive guidelines are controversial because some doctors might view
them as an attempt to write a cookbook that dictates how they should
practice, Weiner acknowledged. But the guidelines are not a doctrine, he
stressed.
"We've looked at all the research in a systematic way to give order to the
chaos that exists in the neurologic literature about Parkinson," he said.
Robin Elliott, executive director of the Parkinson's Disease Foundation in
New York City, touted the guidelines' emphasis on recognition of depression,
sleep and memory problems in dealing with Parkinson's patients.
"If you ask a group of patients what upsets them most about this disease,
it's the fatigue, depression, sleeplessness - that's disproportionate in
Parkinson patients," Elliott said.
At the UCSD Medical Center's clinic for movement disorders, director Dr.
David Song said he hopes the guidelines will encourage doctors to change
certain practice patterns. The recommendations "promote better awareness
about what Parkinson is and is not, and how to treat it with proven
therapeutic strategies," he said.
Unfortunately, he said, there are very few neurologists with expertise in
movement disorders nationwide, so many other brain-disease specialists will
have to step up.
"Most of the time, diagnoses are made by general practitioners and primary
care doctors," Song said. "All have a general knowledge of Parkinson but
there is variability, and for that reason misdiagnosis can occur."
Dr. Wendy Galpern, clinical trials program director for the National
Institute of Neurological Disorders and Stroke, the federal government's
funding arm for neurology research, characterized the guidelines as "the
most rigorous and extensive summary of the status of the field." But, she
said, it also "highlights lots of questions that aren't answered and points
to many other avenues for research."
 Cheryl Clark: (619) 542-4573; [log in to unmask]

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