I was alarmed when reading the study The evolution of diagnosis in early Parkinson disease. Parkinson Study Group published in Arch Neurol. 2000 Mar;57(3):369-72, which stated that:
“Previous studies concluded that initial diagnoses of PD made by general neurologists were incorrect in 24% to 35% of the cases when patients were examined at autopsy. Experts in movement disorders are expected to have greater accuracy of initial diagnosis of PD.”
I was one of the “lucky” ones. I went to a general neurologist when I observed a tremor in my left hand 15 years ago. I was diagnosed with Parkinson’s Disease at the age of 46. In my case, the neurologist ruled out benign essential tremor (a misnomer, as there is nothing benign about it), brain tumor, Wilson’s Disease and Lou Gehrig’s disease. I was ”lucky” that I was diagnosed and received treatment so quickly, unlike others who go for years and years, from doctor to doctor, without an accurate diagnosis and receive either no or inappropriate treatment. I was able to avoid those condescending comments from doctors such as “it’s all in your head” that hard-to-diagnose patients often receive. These patients later discover that it was indeed all in their heads, but not in the way that they originally thought.
When patients are struggling to get a diagnosis, I often suggest that they get an opinion from a movement disorder specialist. A movement disorders specialist is a neurologist who has taken additional training in the subspecialty in neurology called movement disorders. Movement disorders specialists are often involved in research and/or teaching in addition to their clinical concerns and are more typically found at major medical institutions. Such professionals typically follow a greater number of patients with these disorders and are generally more experienced in the use of the various medications (and their combinations) as compared to a general neurologist, an internist or general practitioner.
The topic of misdiagnosis is being discussed this week at the 15th International Congress on Parkinson's Disease and Movement Disorders in Toronto, Canada. Betsy Vierck reports on this topic from the Congress at: http://www.recentlydiagnosedwithpd.org/home/2011/6/7/report-from-toronto-kudos-to-these-docs.html
Related Article:
Steps to Finding a Movement Disorder Specialist by Beka Serdans, RN, MSN http://www.care4dystonia.org/newsletter/StepstoFindingaMovementDisorderSpecialist.pdf
Regarding the correct diagnosis: Great job on this one. I agree that it is vital. It pleases me to know you were correctly diagnosed and early on in order to get the very necessary treatment.
Atypical Parkinsonian conditions are also very difficult to distinguish, primarily from PD or other atypical neuro-degenerative conditions.
The gift of an absolute diagnosis, other than probable S.D., would be a great blessing for me. Thank you for posting this!
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