In 2002, Jamie-Lynn Sigler landed one of the most coveted roles on television: Meadow Soprano, the daughter of mafia boss Tony Soprano on the hit HBO television show, The Sopranos. She was just 20 years old with a promising future ahead of her.
That trajectory changed one evening after a busy day of filming. She remembers walking into her New York City apartment and feeling a heaviness and tingling in her legs—symptoms that two years earlier put her in the hospital and eventually led to a misdiagnosis of Lyme disease. This time, in addition to the “pins and needles” sensation in her legs and feet, she was having problems with urinary flow and control, often finding herself running to the bathroom to avoid an accident.
“I thought I might have a bladder infection, since none of my symptoms by themselves seemed alarming enough for a doctor's visit. After all, I was only 20 years old and had never had any serious health problems.” Although she wasn't feeling herself, she blamed it on the long days on the set.
A SHOCKING DIAGNOSIS
When the abnormal sensations in her legs didn't subside, Sigler asked her parents to take her to the emergency department, where a neurologist ordered a lumbar puncture (spinal tap), a diagnostic test that when used to evaluate for multiple sclerosis (MS) involves removing and analyzing a sample of cerebrospinal fluid (CSF). She also had an MRI and a CT scan to detect disease-related changes in the brain and spinal cord.
Doctors may also order tests called evoked potentials, which record and measure electrical impulses that travel through specific sensory pathways of the nervous system in response to stimuli. Of the three types of evoked potential tests—visual, auditory, and sensory—the visual test is considered the most useful because up to 90 percent of patients with MS have slowed responses on this test.
“MS is very variable, and no two patients are alike,” says Patricia K. Coyle, MD, FAAN, professor of neurology and acting chair of clinical affairs at Stony Brook University in Stony Brook, NY, and director of the MS Comprehensive Care Center at Stony Brook University Medical Center. “But bladder problems, numbness, and tingling sensations are common symptoms.”
When her lumbar puncture and MRI results came back consistent with MS, Sigler was stunned. MS, a chronic autoimmune disease of the central nervous system, damages the myelin sheath, the material that surrounds and protects nerve cells, slowing down or blocking messages between the brain and the body. Sigler, who was diagnosed with relapsing-remitting MS, a form of the disease characterized by symptom flare-ups followed by periods of recovery, says she had trouble accepting the diagnosis. “I was in denial. I wanted to live in a fantasy world where I could pretend I didn't have this disease,” she recalls.
She felt confused, isolated, and depressed, and she worried that she would eventually be wheelchair-bound. No amount of reassurance from her doctor that she could live a full life helped. And she rebelled. Although she was prescribed an injectable drug, she confesses she wasn't always consistent with her medication regimen. “I didn't want the responsibility of being on a daily medication, so I stopped for several years, and for a while I was symptom free. In hindsight, I wish I had stayed on the medication and followed my doctor's orders.”
When on set filming, Sigler often had to sit for five minutes between takes to recharge. If she experienced any muscle weakness or numbness, she would blame her limitations on a bad back. She admits that keeping the disease a secret led to depression.
Although MS is unpredictable and can cause disability for some people, it is highly treatable, says Barbara S. Giesser, MD, FAAN, clinical director of the MS program at the David Geffen School of Medicine at UCLA and co-author of Navigating Life with Multiple Sclerosis, a book in the American Academy of Neurology's Neurology Now Books series. “Treatment for MS involves drugs that reduce ongoing nerve damage and inflammation plus other medications, rehabilitative strategies, and lifestyle modifications that improve symptoms and enhance everyday function and quality of life,” she says.
Sigler's case is not an anomaly: Most people are diagnosed in their 20s and 30s, says Dr. Giesser. And two to three times more women develop MS than men, a sex difference that has increased over the past 50 years, according to the National MS Society. While researchers don't know exactly why women are disproportionately affected by MS, Dr. Coyle notes that women are more likely to be affected by other autoimmune diseases, as well, including lupus and rheumatoid arthritis. Of the 50 million Americans living with an autoimmune disease, more than 75 percent are women.
Sigler was reluctant to reveal her diagnosis, fearing she might lose friends or acting jobs. Her suspicions were confirmed when an industry professional advised her to keep her diagnosis a secret. “I was told having MS would limit my acting career and people wouldn't hire me,” Sigler says. “And because I was so young, I took that advice to heart.” Only her family and a few close friends—including The Sopranos cast members Edie Falco and the late James Gandolfini, who she says was very protective of her—knew her secret.
When The Sopranos ended its eight-year run in 2007, Sigler continued to work as an actor, appearing in television shows such as Entourage, Ugly Betty, and Guys with Kids. Despite often feeling fatigued and stiff and continuing to keep her secret, she says staying busy and being employed was comforting.
During this time, her symptoms began to flare up, coinciding with the end of her two-year marriage to her agent and first husband, A.J. DiScala, in 2006. Sigler is sure the stress of her divorce contributed to the flare-ups. “My right side became weak, and I began to have balance and bladder problems,” she says.
READY TO GO PUBLIC
In 2012, Sigler found love again when she began dating baseball player Cutter Dykstra. The two were engaged in January 2013 and announced the next month that they were expecting a baby. Their son, Beau, was born in August of that year, and Sigler and Dykstra were married in January 2016. It was the birth of her son that prompted Sigler to discuss her diagnosis openly. “I didn't want to ask my son in the future to help keep my disease a secret,” she says.
Sigler says she has been humbled by the expressions of goodwill she received after revealing her diagnosis and surprised by how therapeutic the experience has been. She received supportive messages from fans on social media, as well as from friends and family members who texted and called, offering encouragement and understanding. “I think I made my life harder by not letting people in,” she says. “When I got to a place where I could be honest with others and feel more comfortable asking for help, life got easier.”
It also influenced her decision to become an advocate for the MS community. In January 2016, she partnered with the pharmaceutical company Biogen and Self magazine, for the Reimagine MySelf campaign (https://www.reimaginemyself.com/), which features a blog dedicated to helping women navigate their daily lives while also dealing with any complications of the disease. Sigler says she also wanted to set a good example for Beau about honesty and transparency.
“With the blog, I can be honest and talk about how MS impacts all aspects of my life, how I balance caring for my son with having MS, and how I make my relationship with my husband, Cutter, a priority. The blog also gives me a platform to advocate for MS and become more involved in the MS community.”
In May 2017, Sigler will be awarded the 2017 Medal of Hope at the 24th Annual Race to Erase MS Gala, hosted by founder Nancy Davis, a Los Angeles mother of five who was diagnosed with MS in 1991 at the age of 33. “Coming forward with my diagnosis has been empowering,” Sigler says.
Although Sigler chose to reveal her disease, many people with MS and other neurologic conditions keep silent, fearing that being open about their condition may affect their careers. Disclosing MS to your employer is an individual decision, says Dr. Coyle, who encourages her patients to review their work environment carefully to see if any limitations need to be addressed or if any accommodations could help them do their job better.
“Do you work in a nurturing or hostile environment? How has your workplace dealt with other employees who have disclosed their medical conditions?” says Dr. Coyle. “By law, you aren't required to disclose your condition, but if you believe that disclosing it will make it easier for you to take off time for doctor's appointments or to cut back on a demanding schedule, then it might be worth it to talk with your employer.”
For help in making that decision, go to the National MS Society website at http://bit.ly/NMSS-ShouldITell.
REMISSION DURING PREGNANCY
Sigler's symptoms stabilized for several years, but she has seen a worsening in the last five. “I can no longer wear high heels, and I have some weakness on the right side of my body, as well as balance problems,” she acknowledges. She had worried that MS might prevent her from getting pregnant, and was delighted when her symptoms subsided during her pregnancy. She opted not to take any medication while she was pregnant or breastfeeding her son and experienced no exacerbations of her symptoms during that time. “Pregnancy offers a temporary reprieve for women with MS,” explains Dr. Giesser. “This has led researchers to test whether certain pregnancy hormones might treat MS in women who aren't pregnant.”
In a two-year study conducted by Rhonda Voskuhl, MD, the director of the MS program at UCLA, women with relapsing-remitting MS who took a standard disease-modifying drug plus estriol, an estrogen made by the placenta that peaks toward the end of pregnancy, reduced their relapse rate by 32 percent at the end of the study compared to a group that received the standard MS therapy plus a placebo. Larger clinical trials are needed to confirm the results.
MOVING AGAINST MS
Today, Sigler manages her disease through a combination of twice-daily oral medication (dimethyl fumarate), diet, and exercise. She often feels achy and stiff, but exercise helps. “I have some weakness in my right leg so I haven't been running for the past 10 years,” Sigler says. “I do Pilates twice a week and also take spin classes.”
Dr. Giesser says exercise is important for managing the disease and can be helpful in controlling any co-existing conditions such as high blood pressure and diabetes. “Exercise can improve symptoms such as fatigue, depression, and spasticity,” she says. “I recommend workouts of 20 to 30 minutes three or four days a week that include some form of cardio and resistance training, along with stretching on a daily basis.”
STEPS TO REDUCE STRESS
In addition to regular exercise, Sigler says she makes it a priority to eat healthy, get lots of rest, and practice self-care.
“I take a nap when my son naps, and I've started meditating because I've found it really helps to reduce stress,” Sigler says. “I try to follow a healthy diet with lots of protein and fruits and vegetables. I've noticed that if I don't eat right, I don't feel right.”
Self-care and stress reduction are important tools for managing MS. In 2010, a study conducted by researchers in Switzerland and published in Neurology found that mindfulness meditation helped people cope better with the anxiety, depression, and fatigue associated with MS.
“Practicing healthy behaviors is important for all patients, but especially so for those with MS,” says John Corboy, MD, FAAN, professor of neurology at the University of Colorado Denver School of Medicine and co-director of the Rocky Mountain Multiple Sclerosis Center at Anschutz Medical Campus. “Research suggests that cigarette smoking speeds the progression from relapsing-remitting to secondary progressive MS, so we tell patients to quit smoking, eat a healthy diet, exercise regularly, and keep their minds active by learning new things.”
Much to her delight, Sigler has been working consistently and expanding her horizons since announcing her diagnosis. She starred in the movie, Loserville, released in September 2016, and recently finished filming the Western, Justice. She has also appeared in TV shows, including CSI-Cyber and Baby Daddy.
“Everything I initially worried about hasn't happened,” she says. “I realized that hiding my illness really took a toll on me. It was so liberating to come forward and live openly with MS. I no longer feel self-conscious or alone.”
* Multiple Sclerosis Association of America: http://mymsaa.org; 800-532-7667
* Multiple Sclerosis Foundation: http://msfocus.org; 800-225-6495
* Myelin Repair Foundation: http://myelinrepair.org; 408-871-2410
* National Multiple Sclerosis Society: http://nationalmssociety.org; 800-344-4867
* Multiple Sclerosis: The Basics: http://bit.ly/MS-TheBasics
* Navigating Life with Multiple Sclerosis: at booksellers or from the American Academy of Neurology (AAN) and Oxford University Press at http://bit.ly/NN-MS-book.
* Multiple Sclerosis: A Guide for Patients, Families, and Caregivers, AAN's free DVD and booklet: http://bit.ly/AAN-MS-DVD; 800-879-1960