The Madness and the Mystery of Multiple Sclerosis (MS)
People with multiple sclerosis (MS) may end up in wheelchairs. People with MS climb mountains and run marathons. Both statements are true, but neither accurately describes what it means to have MS.
MS is a widely misunderstood disease — not only by the general public, but even by those who live with it. The goal of March’s MS Education and Awareness Month is to promote understanding of MS and to help people with MS to make educated decisions about their health care needs.
While much progress has been made in research and treatment of the condition, an equal amount of mystery remains. That mystery often leads to a sense of isolation and fear, and newly diagnosed patients don’t always know where to turn for information. (MS Info on the Web)
What is MS?
MS is a neurological disease in which myelin — the substance that protects neurons — is damaged, forming lesions in the central nervous system that interrupt the transmission of electrical currents to the rest of the body. There may be nothing wrong with your legs, for instance, but your brain may have difficulty transmitting the signal to move them.
Relapsing/Remitting MS is the most common form at onset, causing relapses (otherwise known as exacerbations or flare-ups), followed by periods of remission. Remissions can be as short as a few days or as last many years. (Pseudo-exacerbations in MS: Grounded in Reality) There are also several types of Progressive MS, in which symptoms worsen over time.
MS is not contagious.
What are the symptoms of MS?
Symptoms vary greatly from patient-to-patient, from day-to-day, and from year-to-year. Severe fatigue is the most common complaint. While symptoms are often invisible, MS is a serious medical condition. (Dealing with Invisible Symptoms of MS)
Other symptoms include, numbness, visual impairment, slurred speech, tremors, difficulty swallowing, cognitive impairment, vertigo, pain, lack of coordination and, in the worse cases, paralysis and blindness. (A Typical Life with MS) MS is not a psychological condition, but depression is also a common symptom.
Prognosis is near impossible.
MS has a huge impact on the entire family, as well as the patient’s social and employment network, affecting others in profoundly significant ways. (MS: A Family Affair – Multiple Sclerosis in the Marriage)
Though MS itself is rarely fatal, complications due to MS can be.
Next: Who Gets MS… Diagnosis… Treatment Options…
Who Gets MS?
MS is more common in women than men. Incidence of MS is greater in regions further from the equator and is more often found in Caucasians of northern European ancestry than in Hispanics/Latinos or African-Americans and is relatively rare among Asians and some other ethnic groups.
It is difficult to pinpoint when MS begins, but most people receive diagnosis between the ages of 20 and 40. Due to magnetic resonance imaging (MRI), more children are being diagnosed with MS. Among young adults, MS is the most common disease of the central nervous system. (MS: Who Gets It and Why)
An estimated 2,500,000 people around the world have MS. In the United States, estimates vary widely, generally anywhere from 300,000 to 1,000,000. Because MS is not tracked by the Centers for Disease Control or any other federal agency, true numbers are hard to come by. Frustratingly, the U.S. lacks a coordinated effort to track the incidence of MS. (MS by the Numbers: But Who’s Counting?)
How is MS Diagnosed?
Diagnosis can take a few months or even a few years. Many common symptoms of MS mimic other diseases, and their tendency to come and go makes it difficult to doctors to pin down.
There is currently no single definitive test for MS. Diagnosis is made through neurological exam, a series of tests that may include MRI, various vision tests, spinal tap, and nerve and muscle tests. Doctors also use detailed patient history of symptoms and elimination of other diseases to finally arrive at the diagnosis.
What Causes MS?
The cause, though widely debated and researched, remains unknown. MS has long been thought to be an autoimmune disease — one in which the immune system reacts abnormally, causing the body to mistakenly attack itself.
Some studies are looking at the role of a virus or infectious agent.
Because of the lower incidence of MS in areas closer to the equator, exposure to sunlight and vitamin D are also being studied.
According to the National MS Society, genetic research has shown that having a first-degree relative with MS increases your risk of developing MS several times above that of the general population. Some researchers believe that a genetic predisposition to develop MS may combine with an environmental factor that sets off the course of the disease.
There are several disease-modifying injectable medications intended to decrease the number and severity of relapses and stave off permanent disability. Attacks are sometimes treated with steroids, and specific symptoms can also be treated.
It is crucial for people with MS to implement healthy lifestyle choices, including a balanced diet, exercise when possible, rest, and avoidance of tobacco and other harmful products to stay in the best possible health.
Controversial Liberation Treatment
It’s the biggest story in MS news in years! When Dr. Paolo Zamboni released the results of a preliminary study of MS patients indicating a link to chronic cerebrospinal venous insufficiency (CCSVI), a narrowing of the veins that restricts the flow of blood from the brain, causing iron build up, and in turn causing the degeneration of neurons, MS patients around the world took notice. Could this be the breakthrough we’ve been waiting for? (Longing for Liberation)
Dr. Zamboni went on to attempt to treat MS patients with these vein abnormalities (Liberation Treatment) with some positive results. Although the treatment has not been carried out in great numbers, some good outcomes have fueled a worldwide clamor for the Liberation Treatment, as well as conflicting reports of results. (Care2 News: MS Patients Warn of Complications After ‘Liberation’)
Continuing research and a watchful eye by MS activists around the globe (Care2 Group: MS Liberation: End Multiple Sclerosis) will surely keep this story on the front burners.
Next: Employment… Health Insurance… Taking Charge… MS Awareness Month
MS and Employment
Symptoms can drive MS patients out of the workforce, wreaking havoc with health insurance and income. (MS on the Job: Workplace Protections under ADA) The process of applying for disability benefits is tedious and time-consuming, often resulting in repeated denials and a wait time that can exceed two years.
MS and Health Insurance
The disease-modifying medications currently available to treat MS are exorbitantly priced — as much as $7,000 per month — forcing patients to forgo the very treatment which could stave off further disability. There are no generics.
Without group health insurance, individual coverage with a diagnosis of MS — if offered at all — can be priced out of reach of many. Under the Affordable Care Act, people who have been denied coverage in the individual market and have been without coverage for six months are now eligible to apply for the new federal high-risk pools, although prices are still very high. (High-Risk Insurance Pools: Are You Eligible?) Under this health reform law, beginning in 2014, insurers will no longer be able to deny coverage to anyone with a pre-existing condition.
National MS Education and Awareness Month was designated in 2003 by the Multiple Sclerosis Foundation and affiliated groups to raise public awareness of multiple sclerosis (MS). The National MS Society’s MS Awareness Week is March 14 – 20, 2011.
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Ann Pietrangelo is the author of “No More Secs! Living, Laughing & Loving Despite Multiple Sclerosis,” a memoir. She is a member of the American Society of Journalists and Authors and The Author’s Guild, and a regular contributor to Care2 Healthy & Green Living and Care2 Causes. Follow on Twitter @AnnPietrangelo