Dancing is in Mayte Garcia's blood. Her mother was a dancer and taught her daughter to belly dance when she was 3 years old. At age 8, Garcia appeared on the television show That's Incredible! as the world's youngest professional belly dancer. Ten years later, that brash confidence and singular talent earned her a spot in the New Power Generation, a group of backup musicians, singers, and dancers for Prince. She toured the world with him, performing on stage and in his videos.

From the time they met, Garcia and Prince felt a mutual attraction, which evolved into a relationship when she was 19 and marriage four years later in 1996. During their courtship, Prince wrote a song called "The Most Beautiful Girl in the World" for her. But their union was marked by tragedy—the death of their first child six days after he was born from Pfeiffer syndrome, a rare genetic disorder associated with skeletal and systemic abnormalities, and a miscarriage two years later—and the couple divorced under the stress and heartbreak in 2000.

Garcia's strength and resilience in the face of those tragedies would serve her well a decade later when she was diagnosed with multiple sclerosis (MS), something only her closest friends and family members knew about. She remained quiet about it, she says, because she feared people would think she wasn't capable of working.

After her split from Prince and before her diagnosis, Garcia helped choreograph Britney Spears' "I'm a Slave 4 U" video and taught Spears belly dancing moves, which she incorporated into her 2001 MTV Video Music Awards performance when she danced with a python around her neck. Garcia then branched into acting with appearances on 2 Broke Girls, Nip/Tuck, and CSI: NY, among other TV shows. A more recent gig was the VH1 reality series Hollywood Exes, which ended in 2014.

A year after Prince's death in 2016, Garcia was inspired to write a memoir, The Most Beautiful: My Life with Prince (Hachette Books, 2017), which she says was cathartic. "Everyone should write a book. It makes you look back on your life and how much you've gone through."

The process also encouraged her to speak publicly about her disease. Garcia, who turns 46 in November, says she's no longer afraid MS will cost her work, mainly because she's been in remission for years. Her neurologist, Lilyana M. Amezcua, MD, FAAN, associate professor of neurology at the University of Southern California Keck School of Medicine in Los Angeles, says the various disease-modifying drugs Garcia has been prescribed have helped ease her intermittent fatigue, headaches, heat sensitivity, and occasional sensation of an electric shock running down her neck and spine (known as Lhermitte's sign).

"I'll speak out if it gives people hope," says Garcia, who commends actress Selma Blair for her similar announcement last year. "MS can be a horrible disease. But if you take care of yourself and stay in close communication with your doctors, it also can be manageable."

Clues in the Eyes

Garcia's first flare-up occurred in 2010 when she began experiencing vision problems. "I'd just gone on a hardcore diet. I wasn't starving myself or anything, but I would eat every three or four hours and only fish," she says. "I remember feeling 'off' and really tired. I was also losing weight." Then one morning she woke up and couldn't see out of her left eye. "I thought it was lack of sleep, but it didn't go away." She went to an eye doctor, who examined her eyes and told her nothing was wrong. "I didn't understand. I had headaches. I couldn't see brake lights and my depth perception was gone, so I couldn't drive."

She also was exhausted, which she attributed to her restrictive diet, unaware that crippling fatigue often accompanies an MS attack. Finally, after seeing four different eye doctors, she was referred to a neuro-ophthalmologist, a physician specializing in vision conditions related to the nervous system. At Garcia's appointment three weeks later, the doctor said her symptoms sounded like optic neuritis and scheduled an MRI, noting that it might be MS.

Optic neuritis is an autoimmune disorder in which the optic nerve, which connects the retina of the eye to the brain, becomes inflamed. Symptoms include pain and vision loss. "Optic neuritis is often the symptom that leads to a diagnosis of MS," says Benjamin J. Osborne, MD, director of the Multiple Sclerosis and Neuroimmunology Fellowship Program at Medstar Georgetown University Hospital in Washington, DC. "Only after diagnosis do patients wonder if the vertigo or migraine they experienced years earlier were symptoms of MS, too."

After the MRI scan revealed six lesions on Garcia's brain, she was diagnosed with MS and prescribed steroids. "I was in shock. I remember thinking, 'I'm healthy—how could this be happening to me?' But MS doesn't care who you are. It doesn't discriminate," says Garcia, who was born on an Army base in Alabama to parents of Puerto Rican descent. As a child, she lived in Germany and the United States and spent her summers with extended family in Puerto Rico.

While the MRI provided some answers, Garcia was still worried about the slow return of her vision. "My doctor said it would heal with time, and it has. But I do notice it in stressful situations. I'll feel pressure in that eye." Garcia's experience with optic neuritis was typical, says Dr. Osborne. "Vision loss usually gets to its worst point within a few days to a week. Then, even without medication, most patients improve and recover their vision."

Optic neuritis is not unusual among Hispanics with MS, says Dr. Amezcua. A 2017 study in the Annals of Clinical and Translational Neurology found that Hispanics with Native American ancestry had a higher rate of optic neuritis than whites. The causes are likely environmental and genetic, says Dr. Amezcua, although the genetic relationship is still being examined.

More studies are warranted, she says, especially since less than 1 percent of the literature on MS includes Hispanics and African Americans, according to a 2015 study in Neurology: Clinical Practice. Due to a complex interaction of environmental and genetic factors, people of northern European descent have been thought to be most at risk for MS, says Dr. Amezcua. Because of that, she believes, doctors aren't always looking for it in other ethnicities.

Rates of MS among Hispanics in both the United States and Latin America have increased in recent years but are still lower than those of whites and African Americans, according to a 2017 study in Multiple Sclerosis Journal-Experimental, Translational and Clinical. Hispanics seem to develop it sooner and have a worse disease course than non-Hispanic whites, says Dr. Amezcua, although this has not been the case with Garcia, who has had a mild course. On average, Hispanics present with the first symptoms of MS three to five years earlier than whites, and it takes them two to three years longer to receive a diagnosis.

The reasons for this are unclear, says Silvia R. Delgado, MD, a neurologist at the University of Miami Health System. "Environmental and lifestyle factors may account for the longer lag time and differences in disease severity," she says, citing access to health care, higher rates of obesity, and cultural differences.

"It's not just about translating materials into Spanish," says Dr. Amezcua. "We need to understand the risk factors and barriers contributing to Hispanics having more severe disease outcomes." (For further information, watch the outreach film Dentro de Mi and visit the Alliance for Research in Hispanic Multiple Sclerosis.)

Nearly a decade after being diagnosed, Garcia says she feels good and has not had another flare-up. Over the years, she's tried different medications, switching because of side effects or injection site reactions. She's currently taking a low-dose oral medication that suits her busy lifestyle and is appropriate for the stage of her disease. Garcia also sees a headache specialist for migraines and checks in regularly with Dr. Amezcua. She has overhauled her eating habits, steering clear of fad diets. Now she eats mostly plant-based meals and takes vitamin B and D supplements.

"Neither vitamin will help with vision loss during an attack of optic neuritis," says Dr. Osborne, "but people with optic neuritis and MS often have vitamin D deficiency and some have vitamin B12 deficiency, which can mimic the signs and symptoms of MS." He adds, "Usually, a neurologist will check patients' levels of vitamin D and B12 and recommend supplementation, if needed. Boosting vitamin D levels might reduce the risk of further relapses of MS, but that has not been proven."

Garcia allows herself caffeine and wine, but in moderation. "And lots of water!" she says. She works out regularly, too. In the first year of her diagnosis, the fatigue was overwhelming. "I remember not wanting to do anything and being concerned about how I was going to function," she says. "Once I started to feel better I made a conscious effort not to overdo it, but I'm very active."

Staying positive also helps. "I guard my mindset," says Garcia, who adopted a daughter in 2010, the same year she was diagnosed with MS. She also moved to Las Vegas and opened Mayte's Rescue, an organization that finds homes for discarded or lost dogs.

And Prince fans, take note: She has a new Vegas show in development, The Most Beautiful, that's scheduled to open next year and will feature Prince's most famous songs.

Garcia also says she handles stress better. "I react differently," she explains. "Now that I'm older, and because of my condition, I deal with things instead of stressing out. I try to find a solution. If I can't, I accept it. I think Prince's passing helped me with that."

How to Manage the Invisible Symptoms of MS

People with multiple sclerosis (MS) may appear healthy even as they experience symptoms that others do not see, says David A. Lapides, MD, assistant professor of neurology at the University of Virginia in Charlottesville. "These invisible symptoms include debilitating fatigue, pain, sleep disturbance, dizziness, sexual dysfunction, mood disorders, cognitive changes, spasticity, vision problems, heat sensitivity, and bladder and bowel issues."

"Think of multiple sclerosis as an iceberg," says Rosalind Kalb, PhD, a psychologist who specializes in treating the cognitive and emotional challenges that can arise from MS. "So much is going on below the water line." Dr. Kalb, who consults for the National MS Society (NMSS) and its Can Do Multiple Sclerosis programs, recommends a new brochure from the NMSS called "But You Look So Good!" that explains how these invisible symptoms can affect daily life. Patients may be able to mask or manage their symptoms well enough to carry on at work, but they neglect other areas of their lives—a contradiction that might bewilder friends and family members, says Dr. Kalb. "The invisible symptoms can leave others saying, 'Why the messy house?' 'Why are you not out of bed?'"

"We know these symptoms can be difficult to understand for care partners, and even for health care professionals," says Kathleen Costello, MS, associate vice president of health care access at the NMSS, and a certified nurse practitioner. As a result, many go unrecognized and untreated, she says. In response, the NMSS has produced a series of symptom-specific brochures and webinars for professionals, as well as videos and live programs. It also created webinars in collaboration with Can Do Multiple Sclerosis. "The idea is to get the word out. With active intervention, these symptoms can be helped," says Costello.

In an ideal world, everyone with MS would have a counselor or coach when first diagnosed, says Dr. Kalb. "This is a complex turn in your life, and having someone there to provide support, research, and tips is very helpful."

Here, several experts explain the invisible symptoms of MS—and provide strategies for managing them.

Mood Disorders

"Depression is three times more prevalent among people with MS than in the general population," says Dr. Lapides. "Anxiety is also common," he says, perhaps because of uncertainty about how the disease will progress.

Dr. Lapides adds, "It's important to understand that depression can present physically"—with symptoms including weight gain, changes in appetite, and sleep disturbances—"but it also may present as feelings of guilt, loss of interest, worthlessness, and occasional thoughts of suicide."

Symptoms of depression, both emotional and physical, may result "from the impact of the disease on the brain itself or endocrine dysfunction," he says. "Depression also can be caused by disease-modifying therapies, side effects of steroids, or symptoms of the disease itself, including debilitating fatigue and poor sleep."

What can help

A team approach is essential for treating mood disorders, says Dr. Lapides. Patients, physicians, and caregivers need to work together, and caregivers should bring up the topic regularly, if not at every medical appointment. Dr. Kalb agrees and suggests that people get a baseline screening for depression at the time of diagnosis, then get screened for it periodically.

Dr. Lapides tries to get to the root of the mood disorder early on. "Is the person homebound because of urinary urgency or incontinence? Let's treat that so he or she can leave the house. That may be all that's necessary."

Some patients may require cognitive behavioral therapy or antidepressants, he says. Regular exercise can also boost mood and should be encouraged, even if it's done in small increments. Talk therapy or joining an MS support group is appropriate too.

Spasticity and Pain

About 80 percent of people with MS experience varying degrees of spasticity, according to the American Association of Neurological Surgeons. It causes certain muscles to be continually contracted, which leads to stiffness or tightness and can interfere with normal movement, speech, and gait. It also can cause pain, says Timothy L. Vollmer, MD, FAAN, vice chair of clinical research in the neurology department at the University of Colorado in Denver. "Common manifestations of spasticity include pain in the legs, muscle tenderness, and spasms or cramps at night that disrupt sleep. These symptoms fluctuate throughout the day for various reasons, including body temperature and weather changes."

"Pain is one of the most important invisible symptoms of MS," says Dr. Vollmer's colleague John Corboy, MD, FAAN, vice chair of the neurology department and director of neuroimmunology at the University of Colorado. "It can be disabling, may come and go, and is highly variable even within a single individual."

What can help

Dr. Vollmer recommends stretching, range-of-motion exercises, aquatic exercise, and oral medications to block nerve and muscle pain. For more severe symptoms, doctors can prescribe an implanted pump that directs painkillers into the spinal fluid. Dr. Kalb says some of her patients respond well to acupuncture or massage. Anticonvulsant medications have been found to be effective, but she warns they can be sedating. She also suggests patients let people know not to shake their hand or hug them due to their sensitivity.

Cognition Problems

"The most common cognitive change in MS is slowing of processing speed," says Lauren Krupp, MD, a neurologist at NYU Langone Medical Center in New York City. "This can affect many things; for example, retrieving known information can be slowed. In addition, individuals with MS may have problems with complex attention, verbal learning, visual memory, and planning, as well as multitasking."

At least 60 percent of people with MS report some degree of cognitive change, says Dr. Kalb. Dr. Krupp adds that "in general, spouses, close friends, and family members are better at recognizing a patient's cognitive changes than the affected individual."

What can help

"Giving loved ones with MS more time to complete tasks, and keeping these tasks simple and direct, is helpful," says Dr. Krupp. "The information is there, it just takes longer for a person with MS to access it. Breaking tasks down into individual components rather than trying to juggle everything at once also can help."

Dr. Krupp suggests adding a neuropsychologist experienced in cognitive function to the care team, and she advises people with MS to play cognitively demanding games, like computer games that get more difficult as you advance.

Dr. Kalb recommends that family members keep the household organized by putting things where they belong and posting a calendar, so everybody knows where everyone else is. "This helps the person with MS keep track of what's going on without having to ask repeatedly," she says. "Try to create structure so everyone in the family can manage cognitive changes as they happen."

Exhaustion

Fatigue is the most common invisible symptom in MS and often the most debilitating. Its cause is not well understood. "It can be related to the slowing of nerve transmission," says Silvia R. Delgado, MD, a neurologist at the University of Miami Health System. It also may involve various factors, including disrupted sleep, urinary dysfunction, nocturia (frequent nighttime urination), decreased mobility, and medication side effects.

What can help

"Fatigue manifests differently in every person with MS," Dr. Delgado explains. "I tell my patients not to overdo it. I advise them to rest when tired and as needed. Some people need to nap several times a day, others just once in the afternoon. I also suggest they avoid excessive heat exposure and be sure to stay well hydrated."

Exercise is key too. "Many people with MS are so fatigued they don't feel like they can exercise, but they need to keep active," says Dr. Delgado. "It's important to exercise on a frequent basis to increase energy. It's also a natural way to improve sleep, mood, and depression." Meditation can help in this regard as well.

Some people with MS require medication to combat fatigue, but Dr. Delgado sees this as a second-line approach only after trying lifestyle modifications and energy conservation techniques.

When fatigue is really weighing you down, Dr. Kalb suggests writing a mental script to explain to others how you feel. "You might say something like 'It feels as though I'm dragging a 40-pound weight through mud. It's not the fatigue the rest of you feel. It comes at me like a wall, and I have to stop and regroup and start again.'"

Multiple Sclerosis Resources

• Accelerated Cure Project for Multiple Sclerosis: 781-487-0008
• Multiple Sclerosis Association of America: 800-532-7667
• Multiple Sclerosis Foundation: 888-673-6287
• Myelin Repair Foundation: info@myelinrepair.org
• National Multiple Sclerosis Society: 800-344-4867
• Navigating Life with Multiple Sclerosis
• Race to Erase MS: 310-440-4842

Read More

• For additional information about multiple sclerosis, read past Brain & Life articles.
• Download a one-page information sheet called Multiple Sclerosis: The Basics.