How one neurologist diagnosed with multiple sclerosis is using his experience to treat MS patients

close

Video

Neurologist with multiple sclerosis reveals the hidden MS

Neurologist Vincent Macaluso talks about how his battle with multiple sclerosis affects his treatment of fellow patients

When Vincent F. Macaluso was diagnosed with multiple sclerosis (MS) in between his first and second year of medical school, his aspirations to become a doctor took on a whole new meaning.

Now, 24 years later, Macaluso, 47, is a practicing neurologist specializing in MS treatment, in New Hyde Park, New York, and is believed to be one of only a handful of neurologists in the United States who has MS yet also treats it in other patients.

“The main thing I’ve learned is that the best medicine is listening,” Macaluso, whose mother’s career as a nurse helped shape his dreams, told FoxNews.com. “With other doctors [patients] get 15, 20 minutes. I don’t lay it out that way in my practice. I lay out an hour and a half the first time I meet you because I want to hear you. I want to make sure that I hear their story, and I want to help them know what good things we have to help us out.”

Macaluso has the rare ability to better diagnose the disease, which doesn’t have a perfect biomarker test and has a wide range of symptoms characteristic of other conditions, through patient reporting. Making those diagnoses, and helping patients cope with the disease, has been a uniquely acquired skill for Macaluso, who has firsthand experience with MS symptoms, including double vision, memory problems and dizziness.

“’You’re gonna think I’m crazy, but .…’ That’s what they’ll say: ‘My back’s been on fire for the past week’ or ‘My left leg goes out from underneath me,’” Macaluso said, describing his patients’ concerns before they are diagnosed with MS. “I say, ‘You’re not crazy.’ I tell them right away so they don’t feel alone and don’t feel crazy.”

In his new book “Multiple Sclerosis from Both Sides of the Desk,” Macaluso writes about this dynamic, which his patients say has enhanced their treatment.

Multiple sclerosis is a neurodegenerative disease wherein the immune system attacks the protective sheath of nerves, or myelin, which hinders communication between the brain and the body. There’s no cure for MS, but medication can help manage symptoms and alter the progression of the disease.

The National Institutes of Health (NIH) estimates there are upwards of 350,000 Americans diagnosed with MS and that about 200 new cases are diagnosed each week. Symptoms vary, depending on the level and type of nerve damage, but some patients whose nerve damage is severe lose the ability to walk completely.

Bringing ‘hidden MS’ to light

Macaluso said having MS has influenced his practice not only because he can relate to his patients in a personal way but also because he knows what alternative medications to prescribe for symptoms. One of those types of medications, for attention deficit disorder (ADD), helped him finish his book as it improves the weak focus MS patients commonly suffer from.

In writing his book, Macaluso said he hopes to encourage clinical trials of similar drugs for MS, and spread awareness of the realities of MS patients among his colleagues, and MS patients and their families.

Among other neurologists in particular, he said he hopes his book elucidates the idea of “hidden MS,” which refers to doctors’ inability to objectively measure how the disease affects patients’ thinking processes.

“My book will help people [show] we’re not lazy— it’s just how we’re programmed. This is hopefully what I’ll be showing to all of my colleagues,” Macaluso said. “'MSers' looked tired all the time, and would lay there and say they can’t move,” he said. “I’d say, ‘I’m not tired; I just have no drive to get up. They’d name it MS fatigue, and that’s what we’d look like.”

Macaluso explained that MS causes loss of processing speed, psychomotor skills, memory, attention and judgment, while verbal, spatial and writing skills are preserved.

“We go from high-speed to dial-up,” he said, describing how MS affects executive function.

Ted Tierney, a police officer in Suffolk County, New York, said a friend recommended Macaluso as a neurologist, and after his first appointment with the doctor he “saw it clicked with him.”

“I really liked his bedside manner, and I just felt really comfortable,” Tierney, 44, told FoxNews.com. “And then I find out that he has MS himself … and having the diagnosis is very relatable, and us being similar in age, he’s about four years older than me, we sort of go through the whole process through the years and he can relate to my symptoms.”

Tierney said he saw two neurologists prior to Macaluso, neither of who specialized in MS.

“[Macaluso’s] whole life and practice are focused on MS. He seems like he’s consistently on top of the latest developments and research, and that was somewhat unique,” Tierney added.

From the time Macaluso was diagnosed with MS in 1991, he has approached the disease in the pursuit of knowledge rather than by feeling defeated. He participated in clinical trials for some of the earliest MS drugs and set out to learn how to manage MS on his own.

“I should be able to cure this,” he remembers thinking when he believed he may have MS. “That was my initial approach: ‘I should be able to figure this out; I’m smart.’”

Amid his research, he discovered he was better at retaining information while studying in cool temperatures— another aspect of MS he discusses in his book. He noted the brain has 100 billion nerve cells, half of which affect personality and the mind. During nerve loss, a person undergoes personality changes.

“If the temperature gets too high, you get nerve dropout, and they can’t function,” he said, noting pressure also plays a role in MS patients' personality changes. That phenomenon is similar to the disorientation a scuba diver experiences when he or she dives too deep. Scuba divers are required to dive with a partner who can watch for signs of too much pressure exposure for this reason.

He said the medication he has been on for the past nine years, Tysabri— which is approved by the Food and Drug Administration (FDA) for Crohn’s disease and relapsed MS in certain patients— has helped him flagrantly realize this process. Not permitted among patients whose immune systems poise them to see more risks than benefits, the drug does not allow white blood cells to enter the brain.

“[Tysabri takes] down the swelling in our brains so our frontal lobes and personalities could work again, we could start working again and get up and do our jobs again,” he said.

‘The beauty of it’

For patients like Tierney, Macaluso’s example of being able to do just that also sets his practice apart from other neurologists’.

“He’s helped me accept the condition that I deal with,” Tierney said. “So he accepts it, he’s obviously moved forward with his life … and it’s not stopping him from following his passion and being a good, contributing member of society.”

Macaluso said he simply sees MS as another part of him— and something that lives with him, not the other way around.

“Just like I have size 12 feet,” Macaluso said, “and I’m 5’9” and I like the Yankees and have to pay taxes and have to pay a mortgage and I read Spencer novels, it’s another part of my life. I don’t live with it, it’s in my house and it’s up to me to keep on top of the thing and have control over my life.”

It wasn’t always that way for Macaluso. He said he met his wife, Lauren, on the heels of a breakup that he credits to drastic personality changes as the result of MS. He and Lauren spoke for the first time as premed majors at Cornell University during their junior year. They went on their first date the day after they took the Medical College Admission Test (MCAT), Lauren said.

Macaluso said he was drawn to Lauren because she was a good listener, and when he would have days when he wasn’t himself due to the MS, she still saw the “nice guy underneath it all.”

“I didn’t run away screaming, and I think people wondered at that,” Lauren, 46, told FoxNews.com. “I knew quickly in meeting him that he was brilliant and funny, and high in his morals and just a stand-up guy. And immediately we hit it off, and shared such similar beliefs and life goals, and really went into medicine to help others— and still live that to this day. I couldn’t see MS changing that.”

As her future husband had, Lauren approached Macaluso’s MS diagnosis with pragmatism and a hunger to learn more about the disease. He was diagnosed when they were managing a long-distance relationship— she in medical school at Thomas Jefferson University in Philadelphia, and he at Georgetown University in Washington D.C. At Jefferson, Lauren paid extra attention in her neurology classes, and even gave a couple of talks about MS to students and faculty to raise awareness of MS.

The couple shares a private practice where Lauren, a trained pediatrician, works as a breastfeeding medicine specialist. They also have two children, Abigail, 17, and Vincent, 14. Lauren, Abigail and Vincent all have pieces in the book.

“The thing is that right now, my life is the greatest it’s ever been,” Vince Macaluso said, “and I hope good things continue to happen because I finished this book, and the feedback I’m getting is: 'I’m able to help people understand 'MSers' better.'”

“Just because we look fine doesn’t mean we feel fine inside— and that’s the great deception,” he added. “‘My life’s a mess because I can’t do my job anymore. People don’t like me anymore.’ That’s why I have joy in my heart in hearing that people are able to understand things they couldn’t understand— that’s the beauty of it.”