It’s easy to assume that you’d know when you’re dealing with a disease as serious as multiple sclerosis. But it can take years for people with MS to get a proper diagnosis.
Now, new research suggests that subtle symptoms of the disease may show up even 15 years before someone gets diagnosed with MS.
In case you’re not familiar with it, MS (multiple sclerosis) is a chronic condition where the body’s immune system mistakenly attacks the protective covering of nerve fibers. People can experience a range of symptoms with MS, including vision problems, muscle weakness, tingling in the arms and legs, and muscle spasms, according to the National Institute of Neurological Disorders and Stroke (NINDS). Some people with MS will eventually develop partial or complete paralysis, per NINDS.
The findings of the new JAMA Network Open study are shocking, and raise a lot of questions about how people can tell if their symptoms are due to something minor or a condition as serious as MS. Here’s what neurologists want you to know.
Meet the experts: Clifford Segil, DO, is a neurologist at Providence Saint John’s Health Center in Santa Monica, CA; Amit Sachdev, MD, MS, is the medical director in the Department of Neurology at Michigan State University.
What did the study find?
For the study, researchers analyzed the health records of about 2,000 people in British Columbia. They discovered that people who were eventually diagnosed with MS started interacting with the healthcare system more frequently 15 years before they first had symptoms that were later identified as being due to MS.
Every person’s health journey was different, but the researchers were able to pick up general trends. People who were eventually diagnosed with MS started seeing general practitioners more frequently 15 years before they were diagnosed for symptoms like fatigue, pain, dizziness, and mental health conditions like anxiety and depression.
In the 12 years before their diagnosis, the patients saw a psychiatrist more often. Eight to nine years before a diagnosis, they had more frequent visits to neurologists and eye doctors, which may have been linked to blurry vision or eye pain.
Three to five years before they were diagnosed, they visited the ER and had radiology visits more often. A year before their diagnosis, the patients saw physicians more often across a range of specialties, including neurology, emergency medicine, and radiology.
This suggests “that MS may have started earlier than previously thought,” the researchers wrote in the conclusion.
Why might MS be so hard to detect this early?
MS can look slightly different for everyone, and there is a wide range of symptoms, points out Amit Sachdev, MD, MS, medical director in the Department of Neurology at Michigan State University.
MS is an autoimmune disease, and it can cause inflammation throughout the body, he explains. “With excess inflammation, the body may feel generally dysfunctional,” Sachdev says. Meaning, you can feel lousy overall or in a lot of areas, making it hard for doctors (and you) to pin down what could be behind this.
People with MS can also struggle with fatigue, which can be a tough symptom to tie to any one condition, Sachdev says.
Symptoms like pain, mood changes, and fatigue tend to be linked more to an MS diagnosis after it’s made, because they can be due to a range of health conditions, says Clifford Segil, DO, a neurologist at Providence Saint John’s Health Center in Santa Monica, CA. He says he tends to discover these symptoms when he looks back at patient’s health history after an MS diagnosis.
What should you do if you’re having these symptoms?
Doctors say it’s a stretch to suggest that you should assume you have MS if you’re only dealing with fatigue or mood changes. But Sachdev says you also shouldn’t brush off symptoms that just don’t quit.
“Health is deeply personal. To manage it, you need to begin with a provider that connects with you,” he says. “Ideally, you would begin with a single observation or concern that is bothersome. Focusing on this issue with that provider is the place to start.”
But Segil stresses the importance of seeing a specialist if you’re dealing with several symptoms you really can’t explain. “Whenever you have a constellation of symptoms which are without a clear medical diagnosis, seeing a neurologist may be wise,” he says. They can help take a careful assessment of your health history, along with ordering testing, to see what could be going on.
Korin Miller is a freelance writer specializing in general wellness, sexual health and relationships, and lifestyle trends, with work appearing in Men’s Health, Women’s Health, Self, Glamour, and more. She has a master’s degree from American University, lives by the beach, and hopes to own a teacup pig and taco truck one day.
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