Numbness. Vision problems. Pain and exhaustion that wouldn't go away. Loss of balance. For actor Selma Blair, the symptoms began at a young age. Seeking answers, she saw multiple doctors over many years. They blamed her symptoms on everything from depression, anxiety, and exhaustion to hormones and malnutrition. Some said it was all in her head. When she finally got a multiple sclerosis diagnosis in 2018, the "Cruel Intentions" and "Legally Blonde" actor felt relief.
“When Dr. Berkley said the words, ‘You have MS,’ I felt an adrenaline rush of emotion,” Blair writes in her recently published memoir, "Mean Baby: A Memoir of Growing Up."
“It felt like giving birth. The release of it. The catharsis of it. But more than anything, I was overwhelmed by a sense of relief."
Having a multiple sclerosis diagnosis after so many years of questions and unknowns clearly had a powerful impact. But why did it take over 20 years to happen?
What is Multiple Sclerosis?
Multiple sclerosis (MS) is a neurological condition. The body’s immune system attacks healthy cells in your myelin, the protective layer around your brain and spinal cord nerves. Over time, the damage leaves scars – also called lesions. This damage interrupts nerve signals from the brain to other parts of the body.
The result of this interruption: Over time, the disease can break down nerve fibers. As this happens, your body isn’t able to move or function properly.
MS affects everybody differently. It is unpredictable. Each person can experience different effects, including numbness, tingling, mood changes, memory loss, pain, fatigue, blindness, or paralysis.
Nearly 1 million Americans have MS, according to the Multiple Sclerosis Foundation. And yet, estimates are murky, given how hard it is to identify it.
Do you have MS symptoms?
If you’re concerned about multiple sclerosis, our neurology specialists can help.
So, Why Does It Take So Long to Get a Multiple Sclerosis Diagnosis?
The main reason:
There is no single test for multiple sclerosis.
You can’t get a blood test or have an X-ray that shows you have MS. A complex disease with a wide range of symptoms, MS often looks like other conditions. Or symptoms common with MS could be the sign of another disease.
Other conditions that could be mistaken for MS:
- Radiologically isolated syndrome (RIS)
- Vitamin B12 deficiency
- Sjogren’s syndrome
Your doctor must consider many factors that could be causing your symptoms. Eliminating other causes can take years of trial and error.
“Most of the symptoms of multiple sclerosis are nonspecific for the disease,” says neurologist Brian Weinshenker, MD, one of UVA Health’s MS experts. “For example, people get numbness and weakness, and their exam shows abnormal reflexes. But we see those symptoms in many different conditions.”
The Need to Get it Right
“We want to be careful that when we give patients a diagnosis of MS, that diagnosis is correct,” Weinshenker says. “The earlier we diagnose and put people on treatment, the better. But we want to be careful that when we give patients a multiple sclerosis diagnosis, and we start them on very expensive treatments, that the diagnosis is correct."
Not getting an accurate diagnosis means a delay in treatment. Finding MS early gives doctors a chance to slow the disease and reduce permanent brain damage.
But 1 in 5 MS diagnoses in the United States are later found to be incorrect. And how many are missed?
Weinshenker says it can be difficult to balance a patient’s desire to know what’s wrong with their body versus getting the right diagnosis as early as possible.
“There has been a big push to make it easier to diagnose MS,” Weinshenker says. “So we have this tension between wanting to make the diagnosis as soon as possible to give the patients an answer for their symptoms and getting them on an effective MS treatment. But you don’t want to be premature and give patients an inaccurate diagnosis that you might have to eventually rescind.”
How Is MS Diagnosed?
Neurologists usually start the process with:
- Giving you an in-depth physical exam
- Capturing a detailed medical history
- Testing how your brain and spinal cord are working
- Using spinal taps to look for abnormal colonies of immune cells
- Taking blood to look for certain antibodies
- Doing an eye exam
A magnetic resonance imaging test (MRI), for example, can reveal white spots. These mean inflammation in the brain or spinal cord — one sign of MS.
But this test alone isn’t enough. Weinshenker says a brain MRI may show similar white spots in older patients or people with diabetes.
Making a multiple sclerosis diagnosis requires:
- A neurological exam to evaluate your symptoms such as difficulty with walking or balance, muscle weakness, or poor reflexes
- Evidence of nerve damage in at least two separate areas of the central nervous system (the brain, spinal cord, or optic nerves)
- Evidence that the damage occurred at different points in time
- Ruling out other conditions that may cause your symptoms
Moving Forward After a Multiple Sclerosis Diagnosis
Like Blair, many patients are relieved to get an MS diagnosis after years of not knowing why their body was failing them.
“When I announced my diagnosis to the outside world it seemed as if ‘it hit so hard, so fast.’” Blair writes in her memoir. “But they didn’t see the constant fatigue or the years of inflammation or the signs that presented themselves all along. I’d gone through a lifetime of knowing. The only thing that changed was that I was given a name for it.”