A second opinion for a life-changing diagnosis

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The Question: My sister was told that she has MSA atypical Parkinson’s at a Toronto hospital. We want to get a second opinion, as she cannot accept her fate. Can you help us?

The Answer: I can understand why you want a second opinion for a diagnosis that is very serious and life changing, particularly a diagnosis of multiple system atrophy (MSA).

MSA is a disorder where one or more systems in the body degenerate. Poor balance, rigidity, slowness and difficulty with coordination are typically some of the motor symptoms. Low blood pressure upon standing, constipation, and swallowing troubles are some of the non-motor features that can be seen. There is no laboratory or brain scan test to confirm the actual diagnosis.

A neurologist would not lightly hand out this diagnosis unless there was some degree of certainty, according to Robert TerSteege, who as an information and referral associate for the Parkinson Society Central & Northern Ontario, deals with this question from patients often.

“It is not Parkinson’s per se,” said Mr. TerSteege. “MSA is one of the most common types of atypical Parkinsonism. It may look like Parkinson’s initially.”

According to Dr. Mario Masellis, a Sunnybrook neurologist who specializes in cognitive and movement disorders,“ any time we see someone in our clinic and we find features that resemble parkinsonism, we have to do other investigations and medication trials to sort out what we think is the most likely suspect.”

In the case of someone presenting with parkinsonism (symptoms of tremor, rigidity, and slowness), neurologists will typically have patients take a medication called levodopa/carbidopa every day for several weeks as a test: if they respond to the doses, they consider the patient to have Parkinson’s. However, some patients may not tolerate this medication well and people with MSA can fall into this category.

“If you have a good, sustained response and you don’t have atypical features, then the diagnosis is most likely idiopathic Parkinson’s disease,” Dr. Masellis said in an interview. “If the dosage is increased to very high levels and they still don’t have a convincing response, it’s likely due to other conditions.”

One of those other conditions would be MSA. A magnetic resonance image (MRI) of the brain would be done; certain features may support a diagnosis of MSA, but these imaging features are not seen in everyone. It typically is a diagnosis of exclusion; doctors cannot make a definitive diagnosis because a brain biopsy is required and that is not the usual standard of care due to the risks involved.

However, there is one important difference between MSA and actual Parkinson’s, the latter being that patients experience slight declines over many years. With MSA, “there is more rapid progression because of the poor response to Parkinson’s medications and because of other features of the condition including the swallowing difficulties and low blood pressure.”

Dr. Masellis said there are several neurologists who are movement disorders specialists across Canada. Many have a one to two-year wait list for a consultation.

“We don’t lightly give that particular diagnosis,” he said, noting that a comprehensive history and physical exam on several occasions helps make the diagnosis plus medical imaging may be used to support a diagnosis. “If the diagnosis is suspected, they watch it over a period of three to six months to see how the condition evolves.”

While there is always value in getting a second opinion, it also depends on where the diagnosis was made. Most neurologists who make the diagnosis initially would refer to a clinic that specializes in movement disorders.

“Once you get an opinion from one of these clinics, the accuracy of the diagnosis is increased,” said Dr. Masellis. However, “if they are really concerned about the diagnosis or have doubts about the diagnosis, one second opinion should be considered.”

To obtain a second opinion, your sister should go back to her family physician and request a referral to a neurologist who specializes in movement disorders.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.