Parkinson's Is Not Easy to Diagnose
“You have a physiologic tremor,” she says in an assuring tone. “It’s nothing to worry about.”
Gesturing for me to take a seat, Dr. R points to her laptop screen, which reads, "Physiologic tremor...occurs in healthy individuals...not considered a disease but is a normal phenomenon...can be enhanced by stress and anxiety...".
“See, nothing to worry about,” she says.
Butterflies rush out of my stomach.
“Thank you. I’m so relieved,” I say.
“I’m happy to deliver good news,” she says.
If only it had ended this way.
Parkinson's disease is a challenging diagnosis to make
Turns out, at the age of 48, I had young-onset Parkinson’s disease.
An MDS is a neurologist with advanced training in diagnosing and treating Parkinson’s and other movement disorders. Lest we be too hard on Dr. R, up to 35 percent of those living with Parkinson’s disease, or one in three, tell stories of an initial misdiagnosis.1 This is because Parkinson’s can be difficult to diagnose. A number of diseases share similar symptoms, including osteoporosis (stooping), vertigo (balance), and other age-related conditions.
Doctors make a diagnosis of Parkinson’s disease based on a clinical exam; that is, by observing the patient. Typically, doctors first observe the body at rest and then as the patient performs multiple types of movements and exercises.
Sometimes, imaging tests are also used to help confirm a clinical diagnosis and to rule out other, often more aggressive, disorders such as Huntington’s disease (chorea), multiple system atrophy (MSA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and Lewy body dementia (LBD).
Movement Disorder Specialists help to treat Parkinson's
A doctor’s experience with treating Parkinson’s correlates with making an accurate diagnosis. In one recent study, specialists who were not experts in movement disorders, that is, those practicing general neurology, had a correct diagnosis rate of 75%, whereas rates of accuracy by primary care physicians were only 53%. On the other hand, as we would expect, movement disorder specialists (MDS) made the correct diagnosis 84-94% of the time, depending on the study.2,3
Unfortunately, it can prove difficult to find an MDS, particularly outside of larger cities. When one is located, wait times for an appointment can reach eight months or longer. In fact, while we see an increase in the number of people living with Parkinson’s, the United States has a shortage of movement disorder specialists.4
Despite this challenge, establishing a relationship with a specialist, even if requiring travel to another city, is the best option for diagnosis and treatment. This article can assist you in locating a movement disorder specialist near you.
Second opinions can help confirm a diagnosis
If you cannot get an appointment with a movement disorder specialist, I suggest that you consider getting a second opinion if you are facing a new Parkinson’s diagnosis. Ask providers about their experience with diagnosing and treating Parkinson’s disease.
Remember, this can be a difficult disease to diagnose, even for seasoned physicians, and having an accurate diagnosis allows for beginning the proper treatment for Parkinson’s disease, which can improve outcomes.2 In most cases, two opinions are better than one, especially if you cannot be evaluated by a movement disorder specialist.
Do you think there is enough awareness of Parkinson's disease?