The Challenges of Diagnosing MS

Why Did My Multiple Sclerosis Diagnosis Take So Long?

4 min read

After a weekend of knee boarding and outdoor activity, Laura Nixon noticed a tingling spot in her lower body. At first, she brushed it off as a simple injury.

“I really just thought that I was having some back problems,” she says.

But the tingling began to spread and get worse, so she scheduled an appointment with her doctor.

After a referral to a neurologist, Nixon’s care team still didn’t know what caused her pain.

“They did an MRI on my back, and they couldn’t find anything,” she says.

During the next few years, Nixon visited neurosurgeons, orthopedic doctors, neurologists, and chiropractors. Still, it started to get harder for her to walk and keep her balance.

At that point, she brought up the possibility of MS. But her doctors didn’t think that her symptoms fit.

“It seemed like it was kind of taboo. No one really wanted to touch that diagnosis,” she says.

With few options left, Nixon’s neurologist suggested a spinal tap. After that, in August of 2019, she got a diagnosis of MS at the age of 50. 

“It was a relief to know that I wasn’t crazy, but it was also devastating to know that I had a chronic illness,” Nixon says.

But why did it take 14 years to figure out that she had MS?

Multiple sclerosis happens when there’s scarring in a part of your central nervous system. But there’s no test or list of symptoms that definitely signals the disease. So doctors look at symptoms and the results of diagnostic tests, like MRI scans.

“Depending upon where the scarring occurs, whether it’s in the brain or in the spinal cord … you can have very different symptoms that occur,” says Lily J. Henson, MD. She’s the CEO of Piedmont Henry Hospital in Stockbridge, GA, and a member of the National Multiple Sclerosis Society board of directors.

The possibility of these different symptoms makes it harder for doctors to find MS right away. Some people may have symptoms of the condition and not even know it.

Most people find out they have MS after they have an MRI.

It’s rare, but doctors sometimes do something called a lumbar puncture to confirm the condition. That’s when doctors take out some fluid around the spinal cord and examine it. They did this in Nixon’s case.

Sometimes, though, a doctor’s hunch isn’t enough to get the test you need.

“MRI is available in the United States, much more than any country in the world. But it’s still expensive. Health insurance has to cover it,” says Farrah J. Mateen, MD, PhD, an associate professor of neurology at Harvard Medical School.

She says that in addition to insurance, there has to be a really strong case made to do the MRI in the first place.

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