What to Know About Multiple Sclerosis (MS)
Nancy was a 35-year-old mom of three when she began to have random episodes of numbness in her left leg. At first she didn’t think much of it — maybe her leg was falling asleep or she’d pinched a nerve somewhere. But then a few months later she started having dizzy spells, and she fell when she was lifting her 14-month-old out of his crib. Alarmed, she made an appointment with her doctor. Nancy’s doctor ran test after test, but failed to discover the cause of her symptoms. Lyme disease was suspected, then ruled out. This was followed by lupus and fibromyalgia. By this point, months had gone by. Nancy was alternating between days where numbness and pain made walking difficult and days where she felt normal.
Finally, after being referred to a neurologist and undergoing an MRI, Nancy was diagnosed with multiple sclerosis (MS). Having struggled with confusion for so long, she was relieved to learn the cause of her debilitating symptoms. And yet her fight with this mysterious disease had just begun.
The Silent Disease
MS is a disease that cripples the central nervous system — the brain, spinal cord, and optic nerves in your eyes. It’s considered an autoimmune disease because it causes your immune system to attack tissues in your own body.
The primary tissue MS attacks is myelin, a fatty material that wraps around your nerves. Without this protective barrier, nerves become damaged and scar tissue forms.
Since MS attacks nerves, which are responsible for transmitting a wide variety of messages from the brain to the body, symptoms vary greatly from one person to the next. In the early stages of MS, a person may suffer from overwhelming fatigue, visual disturbances (partial loss of vision, double vision), unusual sensations (numbness, weakness, tingling), dizziness, difficulties with mobility (difficulty walking, loss of balance, poor coordination), and trouble urinating. Many people with MS also suffer from chronic pain throughout their body or have problems with memory and concentration.
Dr. David Bowers, medical director and admitting physician at Siskin Hospital for Physical Rehabilitation, says one possible symptom of MS is the feeling of electric shock when lowering the neck. “If you have this feeling when you tilt your head back, it’s usually a pinched nerve. However, people with MS have it when tilting the head forward.”
What’s Wrong With Me?
Because MS causes such a wide range of symptoms, it is notoriously difficult to diagnose. It often goes unrecognized or is mistaken for other autoimmune diseases or neurological disorders.
Another complicating factor is that most MS patients have relapsing-remitting MS, which means they suffer from symptoms for days or weeks, but then feel like they “get better.” The better days and months can even last for years before a relapse occurs.
“MS symptoms are known for being extremely unpredictable,” says Dr. Amjad Munir, medical director at HealthSouth Chattanooga Rehabilitation Hospital. “They may disappear or remit completely, or they may persist and worsen over time.”
Before a diagnosis, people like Nancy often wrestle with themselves as they wonder what is wrong with them. Why do they feel OK sometimes and debilitated at other times? Why can’t they function normally when they’re young or otherwise in good health?
A third complicating factor is that no conclusive test exists to diagnose MS. However, according to Dr. Munir, while no single laboratory test is available to prove or rule it out, magnetic resonance imaging (MRI) can help reach a definitive diagnosis. Dr. Bowers agrees, saying MRIs have become more sensitive.
What it Feels Like to Have MS
If someone you love has MS, you may have wondered what their day-to-day life feels like. While no one can offer a one-size-fits-all explanation, a few key characteristics of living with MS can give us a glimpse into life with the disease.First, because symptoms often come and go and the disease can be so misunderstood, patients who suffer from MS may feel like they need to hide their disease. Many choose not to talk about it, believing their family and friends won’t understand or may accuse them of making it up. Additionally, the unpredictable nature of the disease can inject fear and stress into the lives of those suffering from MS. Today might be a good day, but what about tomorrow? Nancy, the young mom we met at the beginning of this article, may be able to pick up her toddler, run around the park, and make dinner on one day, but struggle to get out of bed on the next. This variability can be very difficult emotionally, especially when combined with the pain and discomfort of physical symptoms. As symptoms reappear or worsen, a patient may begin to suffer from grief, depression, irritability, and anxiety.
Life Beyond a Diagnosis
Many treatments are available to help MS patients manage their disease and live a full life. However, because MS is such a multifaceted disease and it manifests itself differently in each patient, each patient’s treatment plan will look a little different.
Most patients begin by seeing a neurologist, who can prescribe various drugs to slow the progression of the disease. Patients may also be prescribed medications to help with their specific symptoms. “A variety of drugs are available to treat specific symptoms and health problems related to MS such as anxiety, depression, spasticity, fatigue, bladder problems, pain issues, and digestive issues,” says Dr. Munir.Once on medications, MS patients may begin to look for other ways to improve their quality of life. Rehabilitation programs are a great option for those looking to manage symptoms while getting on with their life. These may include speech therapy, physical therapy, occupational therapy, and more. Dr. Bowers explains that rehabilitation is designed to complement other medical treatments, rather than supplant them. “The goal is to improve function,” he says. “We help patients get better at what they can do and find ways to compensate for what they can’t do. When people come in, they’re often surprised at the spectrum of treatments available.”
“Rehabilitation can play a key role in addressing a host of MS-related difficulties,” says Dr. Munir. “It can treat everything from weakness, coordination, poor balance, and fatigue, to spasticity, pain issues, cognitive problems, and trouble swallowing.”
How to Support a Friend With MS
It can be hard to know how to best support a friend or family member with MS, but a few key things can help you on this journey. You’ve already taken the first step by reading this article. The more you learn and know about their disease, the more you can foster empathy.
First, be a listening ear. Encourage them to discuss their feelings and fears with you and to be open about their disease. Make sure they know you’re aware of their hidden symptoms. Keep communication lines open and support them wherever they are in their treatment process.
A second important way you can love your friend is to support MS research and development. If you can become an MS advocate as well as help work toward a cure, your loved one will see from your actions that you care. MS is a difficult disease to understand. It’s complicated, complex, and can look different for different people. Although researchers have yet to discover a cure, people like Nancy can, with the support of their health care provider and loved ones, lead full and happy lives.