30 years after first treatment, Norton Neuroscience Institute continues to provide care for patients with multiple sclerosis

The first disease-modifying multiple sclerosis medication became available in the ’90s. Now quality of life for patients is better than ever before.

It’s Friday morning at the Norton Neuroscience Institute Resource Center.

The phones are ringing. Emails and referrals are coming in from physicians trying to connect their patients with the resources they need outside the doctor’s office.

Patient navigators are meeting with patients, both newly diagnosed or in transition, providing help with the day-to-day challenges of living with a neurological condition.

The entire ecosystem is buzzing.

It’s part of Norton Neuroscience Institute’s goal to care for the whole person, not just the condition.

At the helm is Yvette Cabrera-Rojas, the resource center’s director. She responsible for making sure the office runs as it should.

But for Yvette, this work is more than just a career. It’s personal.

‘I didn’t know what my future was going to look like’

Yvette’s symptoms started in 1989.

She was driving on the highway when — all of a sudden — two lanes became four.

“I had double vision,” she said. “I had pain in my eye. They thought at the hospital I had vertigo, so they sent me home. And then I received a phone call from a doctor at the hospital that I needed to see an ophthalmologist.”

She went through a series of tests, and on the week of July 4, officially was diagnosed with multiple sclerosis (MS). At the time, the news hit her hard.

“I was not happy,” she said. “And I didn’t know what my future was going to look like. I was in my mid-to-late 20s, married, the mother of a baby boy, and I was worried about how my life would turn out.”

Yvette knew how debilitating the disease could be. MS made her father quadriplegic, leaving her to care for him for the final 10 years of his life. She also knew that, at the time of her diagnosis, there were no treatments available. Her symptoms continued to worsen.

If you think you or a loved one may have MS, visit NortonHealthcare.com/MS.

“The first five or six years were a nightmare,” she said. “It was one MS attack after another. I had lost my vision [at times]. I had lost hearing in my right ear for stretches at a time. I was numb on one side of my body for over a year.  In 1991, I woke up one day and lost the use of my right leg [temporarily]. And the only kind of treatments they could use back then were steroids. They would bombard you with steroids for five days at the hospital. It was very bad. There was a lot of uncertainty, a lot of fear. No planning for the future.”

But in 1994, Yvette’s world changed forever.

The Food and Drug Administration approved interferon beta-1b (IFNbeta-1b) for the treatment of relapsing forms of MS. It became the first disease-modifying medication, but was available to patients only through a lottery. Yvette won it, and traveled to Lexington routinely to receive the intramuscular treatments.

“[The shots] were pretty bad and would give you flu like symptoms,” she said. “But back then, the medication only had a 30% to 34% ability to reduce the amount of relapses, attacks a person would have per year. So I took that 30%. It’s better than zero.”

‘What is MS?’

According to the National Institutes of Health, multiple sclerosis is the most common neurological disease of young adults, with symptoms usually beginning between ages 20 to 40.

In MS, the immune system cells that normally protect us from viruses malfunction. Bacteria and unhealthy cells mistakenly attack myelin in the central nervous system. Myelin is a substance that makes up the protective sheath (myelin sheath) that coats nerve fibers (axons).

MS affects different people differently. A small number of people with MS will have little to no disability, whereas others will have a steadily worsening disease leading to increased disability over time. Most people, however, will have short periods of symptoms followed by long stretches of relative MS inactivity.

Symptoms of MS can include vision issues (blurred or double vision), muscle weakness and stiffness, imbalance, bladder control issues, dizziness and more. MS also can cause mental or physical fatigue, mood changes and cognitive dysfunction.

There are four main types of MS.

Clinically isolated syndrome refers to the first episode of symptoms, such as eye movement pain or numbness and tingling that lasts more than 24 hours. These symptoms can be caused by inflammation or damage to the myelin that covers nerve pathways. Sometimes there is an indication of MS on an MRI scan, sometimes not. If the diagnosis is a condition known as clinically isolated syndrome, starting patients on medication soon can help improve their condition in the future. In some cases, the condition may warrant close monitoring without medication.

Relapsing remitting MS is the most common form of MS and represents about 85% of patients. Life with relapsing remitting MS means going for periods of no symptoms, then encountering a relapse or exacerbation where symptoms last for more than 24 hours. Symptoms can last for days or months before going away in part if not completely. The level of symptoms after a relapse establishes a new baseline until the next exacerbation. Sometimes the new baseline is no symptoms; sometimes it’s something that lingers that wasn’t there before.

Secondary progressive MS is the type of MS that comes later in the disease’s progression. Rather than sudden onset, symptoms are more gradual. Patients may develop new brain lesions or more disabilities and other symptoms.Generally, secondary-progressive MS represents a transition from relapsing-remitting MS over time.

Primary progressive MS affects only about 10% to 15% of patients. Rather than stair-step symptoms of relapsing remitting MS, primary progressive MS gradually progresses without remissions or relapses. These patients often will have trouble walking or will have another symptom that gets worse over time. It’s typically difficult for the patient to pinpoint a specific episode of worsening or improving symptoms.

‘A one-of-a-kind organization’

In the 30 years since interferon beta-1b was introduced, treatment has changed drastically for patients with MS. There are now roughly two dozen disease-modifying therapies readily available. They can be given orally, through injection or even through infusion. Even more, treatment plans can be tailored to the individual, to manage their specific symptoms.

It’s a far cry from where things stood when Yvette was first diagnosed in 1989.

“I think of all the people who have suffered, of those who were diagnosed before any of the medications were available to us,” Yvette said. “And, you know, for me it’s sad, because it all boils down to timing. My father had MS at a time when nothing was available to him except steroids. He would not live to benefit from these new treatments. What we know today, and what we have available in treatment options, are all due to advancements in science. And who knows? Twenty years from now, maybe today’s medications [will be] naught compared to what will be available in the future.”

Norton Neuroscience Institute Resource Centers have developed into regional leaders in providing help to patients with the day-to-day challenges of living with neurological conditions. More specifically for MS, the Hussung Family Multiple Sclerosis Center provides a full range of patient support options, including remote and in-person classes, on-demand patient education videos and a well-rounded team with expertise to provide care for the whole person.

The clinic is recognized as a Center for Comprehensive MS Care by the National Multiple Sclerosis Society.

“The resource center is a one-of-a-kind organization,” said Andrea V. Rogers, R.N., patient navigator for patients with MS, Norton Neuroscience Institute Resource Centers. “And that’s the thing with chronic illness. It’s not just, ‘Hey, take this medicine and go about your way.’ There are so many other factors. So it’s been huge, you know? We’ve gone from having essentially no hope [30 years ago], to patients living a completely normal life. They get to plan vacations, have children and all sorts of other things.”

Each year, they help thousands of people gain that hope of living their lives to the fullest. And while progress sometimes can be hard to quantify, there is proof the work is paying off. To see it, just ask the person who’s experienced it herself over the past 30 years.

“It feels wonderful to witness the progress,” Yvette said. “I mean, this is my purpose.  I have a quote up on my wall that says, ‘Be the change you wish to see in the world.’ And that’s what I wanted to do. I saw a void in the community with all of these individuals living with MS, and I didn’t want anyone to go through what I had gone through. And so it feels good. It’s been healing actually. Helping people is a way to heal.”

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