That’s how long actress Selma Blair struggled with undiagnosed flare-ups of multiple sclerosis. She thought it was a pinched nerve—and, even for her, a Hollywood actress whom you might expect to get the best of the best health care, it was a challenge to get doctors to take her symptoms seriously.
“I fall sometimes,” she said. “I drop things. My memory is foggy. And my left side is asking for directions from a broken GPS…it’s a drag, literally.”
But when she finally had an MRI and a neurologist identified about 20 MS lesions on her brain, she said, “I cried with some relief. Like, ‘Oh, good, I’ll be able to do something.’”
Blair’s experience isn’t that unusual, say Dr. Suzanne Smith and assistant director Rebecca Rahn, both of the Augusta MS Center at Augusta University Health.
“MS is diagnosed most commonly in the ages between 20 and 50. It can occur in children and teens, and those older than 50,” said Smith. “But it can go unrecognized for years.”
Added Rahn, “The incidence of MS in the United States according to the Multiple Sclerosis Society is over 1 million people. It’s a lot higher than previously suspected.”
Blair’s crippling fatigue and cognitive problems are typical symptoms. (Others can include pain, loss of sensation or numbness, paralysis, bowel/bladder problems, vision problems or blindness, even sexual dysfunction.) But that’s another reason MS can be so hard to diagnose—because the usual symptoms tend to be harder for those on the outside to see. “It’s very common for friends and family to say, ‘But you look so good,’” said Rahn. “The MS community identifies with that because outside, you may appear fine, but you’re dealing with all of this fatigue and cognitive trouble.”
No one knows why or how someone develops MS. Something—and no one has been able to determine what exactly—triggers the immune system to attack the brain and spinal cord, stripping the protective cover of myelin from the nerve cells and fibers and causing lesions.
Those lesions trip up the signals going from the brain and spinal cord to the rest of the body, causing MS symptoms.
But experts do know this: Diagnosing MS early can make a huge difference.
The Difference With MS
For most of us, the image we have of MS is that person in a wheelchair.
That may have been accurate 10 years ago, but not today. Neurologists and other specialists have been working hard to diagnose MS earlier and start patients on treatment sooner. Unlike other neurological diseases like Alzheimer’s disease, “We can slow MS,” said Smith. “Our goal is to stop disease progression, and we have highly effective therapies now that are very beneficial.”
According to Rahn, just in the past month, two new therapies were approved for MS. “MS is one of those disease states where we’ve had the most positive clinical trials,” she said. “Over the past 10 years, we’ve gone from two classes of drugs to now 18. Today the treatment options are so much better and also more varied so you can find the right drug for each individual patient.”
Treatments can’t reverse the lesions, but if the disease is diagnosed after the first flare-up, treatments can help prevent further disability. “The most common form of MS is relapsing MS,” Smith explained. “Patients develop symptoms, and over time, symptoms may go away. They may have complete resolution [no symptoms] or some degree of symptoms. But if flare-ups continue, patients can accumulate disability over time.”
Patients today can try a variety of disease-modifying therapies, from self-injectable home therapies, oral medications or infusions that can be done in a doctor’s office, a local infusion site or sometimes at home.
That’s part of a very personalized approach, which takes into account a person’s lifestyle and stage in life. “If you’re wanting to get pregnant in six months, that’s different from someone who has a lot of other diseases like heart disease or diabetes,” said Rahn.
Which is why it’s very important for patients to get care from a specialist at an MS center, who knows all the options available and how to target drug therapies to fit with all the different aspects of a person’s lifestyle and overall health. MS centers also offer physical, speech and occupational therapists who are trained in MS; neuro-psychologists and urogynecologists; even counselors who specialize in diet and exercise.
With the options available today, people around you whom you know and love may have MS—and you might not even know it.
“When we talk to patients and families about the clinical course of MS, they are amazed to find out that patients run marathons, have children, live completely normal lives,” said Smith.
Still, there can be a grieving process. “Diagnosed patients, as well as their family, do have to get past the life they thought they were going to have, but at the same time, they often can still achieve that,” said Rahn. “And I think what patients would want people to recognize is that they are not their MS. It doesn’t change who they are as an individual. They can still live their best life and accomplish so many things apart from having a chronic illness.”
To find a primary care physician or schedule an appointment at Augusta University Health, visit augustahealth.org or call 706-721-2273 (CARE).