What You Should Know About This Unpredictable Disease
Multiple sclerosis, or MS, is somewhat of a mysterious disease with crippling symptoms. While not curable, this chronic illness can be manageable if caught early. Although symptoms can go unnoticed for years, the first signs typically appear between ages 20 and 40. And MS is at least two to three times more common in females than males. In fact, research indicates multiple sclerosis is the leading cause of irreversible neurological disability in young women in the United States.
If you or a loved one is diagnosed with multiple sclerosis, the news may hit hard. Absorbing information on the range of symptoms, tests, and treatments can be overwhelming. But knowing the tools available will help you adjust and continue to live a fulfilling life.
By Holly Morse-Ellington
A Central Nervous System Disease
A potentially disabling disease, multiple sclerosis affects the central nervous system, made up of the brain and spinal cord. With MS, the immune system attacks the protective fatty material that surrounds nerve fibers in the brain or spinal cord. Like other autoimmune disorders, the body’s natural defense network mistakenly goes to war against healthy cells instead of foreign invaders, making your body a battlefield. In terms of MS, the exposed nerves become damaged, which disrupts communication between your brain and the rest of your body. Essentially, your body’s troops lack a general to give orders from the command center.
Signs of multiple sclerosis vary case by case and depend on the person and the location of affected nerves. More often than not, though, symptoms hinder movement. Sufferers may experience numbness or weakness in limbs; electric, shock-like sensations when bending the neck; or tremors and unsteady steps. Depending on how the disease progresses, some people with MS may even lose the ability to walk independently or to walk at all.
Damage to nerve function can also impair eyesight. The effect of MS on the eyes’ optic nerves often makes eye movement painful. Patients may experience blurry vision, prolonged double vision, or even partial to complete loss of vision.
Doctors have yet to pinpoint the cause of the disease, but research suggests it’s a combination of environmental and genetic factors. For example, having a low level of vitamin D and limited exposure to sunlight may increase your risk. Other potential risk factors include family history, personal history with certain viruses such as Epstein-Barr (the virus that causes mono), smoking, age, and gender.
Not only is MS more common in women, but symptoms can also be unique to women. For instance, lack of balance, depression, and fatigue tend to worsen for females, especially during menstruation and after menopause.
Symptoms such as lack of balance, depression,
and fatigue tend to worsen for females, especially
during menstruation and after menopause.
Difficulty with Diagnosis
Identifying MS is a bit of a catch-22. On the one hand, early detection affords greater treatment options. On the other hand, MS is hard to quickly and accurately diagnose. There is no conclusive test to determine multiple sclerosis. Instead, doctors rely on ruling out other conditions that might have similar signs or symptoms. This can take some time, as many central nervous system infections and disorders have characteristics that mimic MS.
Symptoms can be subtle too. “Multiple sclerosis can be hard to diagnose because the symptoms can be vague, transient, and nonspecific,” explains Dr. Sharon Farber, a neurologist on staff at CHI Memorial. Plus, multiple sclerosis can take different courses as it progresses. “Initially, symptoms usually resolve, but with time, they get worse,” she adds. There’s some degree of wait and see, particularly if symptoms disappear into a remission-like state. Unfortunately, even once a diagnosis is confirmed, the doctor may not be able to predict how that particular case of MS will advance until a pattern emerges.
The tricky nature of symptoms and diagnosis may cause you to doubt yourself. Ultimately, if you suffer from any number of the symptoms, persist with your doctor to find answers.
Certain criteria assist in diagnosing MS. To make an official diagnosis, doctors are instructed to find evidence of damage in at least two different areas of the central nervous system, find evidence that the damage occurred at different times, and lastly, rule out all other possible illnesses. After taking a full medical history, your doctor may recommend an MRI, blood tests, spinal fluid analysis, and electrical stimuli tests.
Living with MS
If you are diagnosed, treatment for MS tends to include three aspects: drug therapies to help regulate the immune system, drug therapies to treat specific symptoms, and behavioral-lifestyle changes. Approved medications may decrease the number of relapses and slow the condition’s progress.
Tossing risky habits is important too. Smoking not only increases the risk of developing MS and advances symptoms, it may also block the full effect of treatment therapies. Changes in diet may also improve symptoms. Research recommends cutting back on red meat, dairy, eggs, and gluten.
Beyond managing the physical aspects, it’s important to manage the stress as well. Try to maintain normal activities as best you can, as well as pursue hobbies you find have a calming effect. You might have days you want to withdraw, but try to stay connected to family and friends. Consider joining a support group. In addition to discovering you are not alone, support groups can be a good place to speak honestly without sugarcoating the tough stuff.
“The best ways to be there for a loved one who has MS include providing emotional support and helping with physical problems when the disease is more severe.”
Dr. Sharon Farber
Being There for Someone with MS
If a loved one has been diagnosed with MS, there are ways you can help. “The best ways to be there for a loved one who has MS include providing emotional support and helping with physical problems when the disease is more severe,” says Dr. Farber.
In general, avoid making assumptions based on other personal accounts you have heard or read about. MS symptoms can be unpredictable, and side effects from medications affect each person differently. So, learn more about the disease and its visible and hidden effects. You may not ever know exactly how your loved one feels, but they’ll greatly appreciate the effort.
You can also offer to help with routine tasks and daily activities. MS can take a toll on fundamentals like walking, using the restroom, and making phone calls. Need for assistance varies depending on how much the condition has progressed, but being available to pitch in when necessary can be helpful and comforting.
Mostly, just be the friend or partner you’ve always been. It’s okay when MS does not dominate the conversation. And it’s okay to talk about your ups and downs too. Healthy relationships – vital sources of support – work best as two-way streets.
MS can impact your daily routine. You may experience more than one adjustment period as symptoms tend to fluctuate in type and intensity. But your life does not have to revolve entirely around MS. You may need to modify certain aspects of your lifestyle, but you can lead a fulfilling life with MS. HS