Survey: Misdiagnosis, Myriad Symptoms Common for Patients with Multiple Sclerosis

A new survey of 5300 patients with multiple sclerosis in the United States suggested nearly half had to visit a physician at least 5 times before being correctly diagnosed with MS, and 4 in 10 were initially misdiagnosed with another condition.

The survey findings from Health Union, a Philadelphia-based healthcare information service also showed that MS patients regularly encountered wide array of symptoms, far beyond those typically discussed in most news coverage of the disease.

Of the 42% of patients who were initially misdiagnosed, one quarter were told they were depressed. Another 15% were diagnosed with migraines and 14% were diagnosed with fibromyalgia. Psychiatric disorders, chronic fatigue syndrome, and Vitamin B-12 deficiency were also common incorrect diagnoses.

Tim Armand (pictured), president and co-founder of Health Union, said the survey helps paint a fuller picture of the hurdles people with MS must overcome.

“The results of this survey clearly show that people with MS struggle with a disease that impacts all aspects of their life in ways that many around them simply cannot see,” said Armand, in a press release.

Armand said patient support networks could be integral in sharing information among patients and with also helping patients feel validated.

Findings pointed out that once patients received the correct diagnosis, nearly two-thirds (65%) start treatment within the first three months post-diagnosis. However, the survey also revealed that some patients are apprehensive about MS drugs. Forty-two percent of respondents said they were worried about the side effects of MS treatments, and 35% said they worried about the safety of disease-modifying therapies.

Devin Garlit, a patient advocate with Health Union, said it took 13 years for him to find the right therapy.

“Finding the right treatment can be a difficult process that requires significant trial and error. You may have side effects with one, the next may not work well, and another may not be covered by insurance,” said Garlit, in the press release.

Regarding symptoms, the survey found that MS patients faced many discomforts on a day-to-day basis. Large majorities of patients reported symptoms commonly associated with MS, such as fatigue (87%), numbness or tingling (75%), “brain fog” and memory loss (70%), muscle spasms (67%), and muscle weakness (64%).

However, other symptoms less commonly linked with the disease were also reported in high numbers. For instance, 61% of respondents said they experience bladder problems, while 55% reported chronic pain as a symptom of their disease. Depression (53%) and anxiety (48%) were also common, as was sexual dysfunction, reported by 29% of patients surveyed.

Garlit said these symptoms could be frustrating in multiple ways.

“Many people don’t realize that some of the worst MS symptoms are invisible,” he said. “Severe pain, depression, and cognitive difficulties like memory loss are common in those with MS, but many MS patients themselves don’t even realize they are related to the disease. Not only are these symptoms difficult to live with, we also struggle to explain them to others, sometimes even doctors, because they can’t see them.”

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