Why is multiple sclerosis so hard to diagnose?

Selma Blair

Actress Selma Blair recently revealed via social media that she has multiple sclerosis. She says that, looking back, that signs of the disease were present for well over a decade before she finally got a diagnosis.

“I have had symptoms for years but was never taken seriously until I fell down in front of [a doctor] trying to sort out what I thought was a pinched nerve,” she wrote on Instagram. “I have probably had this incurable disease for 15 years at least.”

The “Cruel Intentions” star continued on Instagram that, because of the disease, she sometimes drops things and falls. She also craves sleep.

Her experience of MS going undetected for such a long time isn’t uncommon.

ALSO SEE: What is multiple sclerosis? Selma Blair reveals ‘incurable’ MS diagnosis

It’s not that testing doesn’t exist. One of the most accurate methods is magnetic resonance imagining (MRI), can reveal lesions on the brain or spinal cord, according to Dr. Jiwon Oh, staff neurologist at Toronto’s St. Michael’s Hospital and scientist at the Keenan Research Centre for Biomedical Science.

Waiting for such an exam takes time, however, as does getting an appointment with a specialist. Then there’s the fact that symptoms of MS mimic those of other conditions and can be different from one person to the next.

“Sometimes the symptoms are somewhat subtle, and people will shrug things off,” says Oh, who’s also an assistant professor at the University of Toronto. “They might think, ‘I’m feeling off because I slept the wrong way or I haven’t been eating properly’. It’s really striking how people have a very different threshold of acknowledging whether there’s a symptom or not.”

With a certain subtype of MS, she says, people may experience optic neuritis, or inflammation of the optic nerve. “They may have blurriness in one eye then over many days it gets a lot worse to the point where they’re almost blind in that eye. Often there’s pain in the eye at same time. But it could be very subtle, and people may just think ‘My eye got smudged,’ or ‘I got mascara in my eye.’ It’s not surprising at all that it can take a long time to diagnose.”

MS occurs when the immune system attacks the protective sheath, called myelin, that covers nerve fibers, resulting in communication problems between the brain and other parts of the body. The nerves themselves can deteriorate or become permanently damaged.

Besides vision problems, other signs are numbness or weakness in one or more limbs, usually on one side of the body; tingling or pain; shock-like sensations that occur with certain neck movements; trouble with balance or coordination; slurred speech; dizziness; and problems with bowel or bladder function.

ALSO SEE: Plus-size supermodel diagnosed with MS talks triumphing her ‘body’s betrayal’

Among the various subtypes of MS are “relapsing-remitting,” where symptoms fade and return off and on for many years; “secondary progressive,” which becomes progressive after initially following a relapsing-remitting course; and “primary progressive,” where the disease is progressive from the start, according to HealthLinkBC.

So when should someone seek medical advice? Generally speaking, Oh suggests people see their doctor if they have neurological symptoms that are present for at least a day and that get much worse over a period of many days—to the point where they simply cannot be ignored.

“It won’t be symptoms that go away in seconds or minutes, like if you cross your legs and feel like you’ve pinched a nerve but you shake it out and it goes away,” she says. “It tends to get a lot worse over many days.”

Canada has one of the highest rates of MS in the world, according to Statistics Canada, at 290 cases per 100,000 people. Women are two to three times more likely than men to have MS.

MS is one of the few chronic neurological diseases that affects young people. In Canada and other countries, 82 per cent of people with MS had been diagnosed between the ages of 20 and 49. The average age at which people first experienced symptoms was 32, with a diagnosis about five years later, at age 37.

It’s also an area of neurology that has seen tremendous advances in terms of research and treatment options over the last decade, Oh says. Treatments include medication, plasma exchange, and physical therapy.

“There’s hope,” Oh says. “Everybody tends to think people with MS are in wheelchairs, but that’s absolutely not the case, especially with the modern treatments we have. We have had a near tripling of treatment options in the last 10 years.”

Let us know what you think by commenting below and tweeting @YahooStyleCA!
Follow us on Twitter and Instagram.

Check out Yahoo Canada’s podcast, Make It Reign — our hot takes on all things royals in a non-stuffy way — on Apple Podcasts and Google Podcasts.