Misdiagnosis, missed diagnosis, premature diagnosis, just some of the things I have witnessed in our journey with PD. We personally have experience with misdiagnosis. My husband’s tremor was labelled Familial Essential Tremor for years before he was referred to a neurologist who realized it was actually Parkinson’s. In my father’s case, his diagnosis was missed. His family doctor apologized to him for not seeing the signs, as he put it, at least 10 years earlier. And, we have many friends who are prematurely diagnosed with PD only to later learn that they actually have something else, and often more serious. There are several neurological disorders such as Multiple System Atrophy that are similar in symptomology but different in progression and treatment.

How did a neurologist finally decide that my husband had Parkinson’s Disease? There is no definitive bloodwork that can be done. There is a test called a DaTscan, similar to an MRI, that looks at the brain’s dopamine system, but it is expensive and normally only used to verify a diagnosis. In my husband’s case, the doctor looked at him, watched him walk and then told him he had PD. To confirm the diagnosis, he was prescribed carbidopa-levodopa. The doctor said that if the medicine worked, we would know for sure he had the disease.

There are many exciting research projects out there looking at everything from early detection through facial cues or sense of smell to genetic biomarkers that indicate propensity for a PD diagnosis. Until we can better understand the brain, however, the best tool is still going to be that personal, one-to-one visit with a neurologist, preferably a Movement Disorder Specialist, who is trained in recognizing the symptoms. We can’t blame the doctors if they are confused and miss or mis-diagnose because they are only working with the tools they have available at this time. Let’s hope it gets better soon.

Visit How Parkinson’s Disease Is Diagnosed | Johns Hopkins Medicine to learn more about what is currently being done. Visit the Michael J Fox Foundation and initiate a search for research into early diagnosis to see what may be coming soon.