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Just the Facts: Frequently asked questions about Multiple Sclerosis

What is multiple sclerosis?

Multiple sclerosis is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be an autoimmune disorder. This means the immune system incorrectly attacks the person's healthy tissue.

MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, and blindness and more. These problems may be permanent or may come and go.

Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it. MS is not considered a fatal disease as the vast majority of people with it live a normal life-span. But they may struggle to live as productively as they desire, often facing increasing limitations.

What other services are available for children with MS?

National Pediatric MS Center at Stony Brook University Hospital Teen Adventure Weekend

National Multiple Sclerosis Society

What are the different types of MS?

In an effort to develop a common language for evaluating and researching MS, an international survey was conducted among scientists who specialize in MS research and patient care. Analysis of responses resulted in defining the following categories, which were introduced in 1996.

  • Relapsing-Remitting

    Characteristics: People with this type of MS experience clearly defined flare-ups (also called relapses, attacks, or exacerbations). These are episodes of acute worsening of neurologic function. They are followed by partial or complete recovery periods (remissions) free of disease progression.

    Frequency: The most common form of MS at time of initial diagnosis. Approximately 85%.

  • Primary-Progressive

    Characteristics: People with this type of MS experience a slow but nearly continuous worsening of their disease from the onset, with no distinct relapses or remissions. However, there are variations in rates of progression over time, occasional plateaus, and temporary minor improvements.

    Frequency: Relatively rare. Approximately 10%.

  • Secondary-Progressive

    Characteristics: People with this type of MS experience an initial period of relapsing-remitting MS, followed by a steadily worsening disease course with or without occasional flare-ups, minor recoveries (remissions), or plateaus.

    Frequency: 50% of people with relapsing-remitting MS developed this form of the disease within 10 years of their initial diagnosis, before introduction of the "disease-modifying" drugs. Long-term data are not yet available to demonstrate if this is significantly delayed by treatment.

  • Progressive-Relapsing

    Characteristics: People with this type of MS experience a steadily worsening disease from the onset but also have clear acute relapses (attacks or exacerbations), with or without recovery. In contrast to relapsing-remitting MS, the periods between relapses are characterized by continuing disease progression.

    Frequency: Relatively rare. Approximately 5%.

How common is MS in children and what is age of onset?

MS is usually thought of as a disease of adults, with the highest incidence of new diagnosis among people in their 20's to 40's. It can rarely occur in children (less than 18) and very rare in children less than 10. Children with MS generally experience the same types of symptoms as adults, including possible cognitive dysfunction that may affect school performance.

Why is early diagnosis so important?

Early diagnosis is important because there are now treatment options available that may help to slow the progression of the disease. There are also treatment modalities that can help with school and social issues as well as concerns regarding cognition.

How will I know if my child has MS?

Children present with the same types of symptoms as adults, including possible cognitive dysfunction that may affect school performance. Common symptoms include: vision changes, weakness of limbs, numbness of limbs. Symptoms should be present more than 24 hours. If you have concerns about your child, they should be evaluated by a pediatric neurologist or an MS specialist.

What medications and treatments are available?

The National Multiple Sclerosis Society recommends treatment with one of the FDA-approved "disease-modifying" drugs as soon as possible following a definite diagnosis of MS with active or relapsing disease. These drugs help to lessen the frequency and sever-ity of MS attacks, reduce the accumulation of lesions (areas of damage) in the brain, and may slow the progression of disability.

The FDA has also approved a disease-modifying drug for reducing disability and/or the frequency of attacks in patients with secondary-progressive, progressive-relapsing or worsening relapsing-remitting MS. This drug is a chemotherapeutic agent. The lifetime dose is limited to prevent heart damage.

In addition to drugs that address the basic disease, there are many therapies for MS symptoms such as spasticity, pain, bladder problems, fatigue, sexual dysfunction, weakness, and cognitive problems. People should consult a knowledgeable physician to develop a comprehensive approach to managing their MS.

Can MS be cured?

Not yet. There are now FDA-approved medications that have been shown to "modify" or slow down the underlying course of MS. In addition, many therapeutic and technological advances are helping people manage symptoms. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging.

Is MS contagious or inherited?

No. MS is not contagious and is not directly inherited. There is a very small correlation between parents with MS and children or adult children developing MS. However, the vast majority of individuals with MS have neither a parent nor a child affected with the disorder. Studies to date do suggest that genetic factors may make certain individuals more susceptible to the disease than others, but environmental factors may also be important. Since the risk of MS is quite small, the diagnosis of MS should not prevent someone from becoming a parent.

Does MS always cause paralysis?

No. Moreover, the majority of people with MS do not become severely disabled. Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.

Is MS fatal?

In rare cases MS is so malignantly progressive it is terminal, but most people with MS have a normal or near-normal life expectancy. Severe MS can shorten life.

What causes the symptoms?

MS symptoms result when an immune-system attack affects myelin, the protective insulation surrounding nerve fibers of the central nervous system (the brain and spinal cord). Myelin is destroyed and replaced by scars of hardened "sclerotic" tissue. Some underlying nerve fibers are permanently severed. The damage appears in multiple places within the central nervous system.

Myelin is often compared to insulating material around an electrical wire; loss of myelin interferes with the transmission of nerve signals.

What are the typical symptoms of MS?

Symptoms of MS are unpredictable, vary from person to person, and from time to time in the same person. For example: One person may experience abnormal fatigue and episodes of numbness and tingling. Another could have loss of balance and muscle coordination making walking difficult. Still another could have slurred speech, tremors, stiffness, and bladder problems.

Sometimes major symptoms disappear completely, and the person regains lost functions. In severe MS, people have symptoms on a permanent basis including partial or complete paralysis, and difficulties with vision, cognition, speech, and elimination.

How many people have MS?

Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the numbers can only be estimated.

Who gets MS?

Anyone may develop MS but there are some patterns. Twice as many women as men have MS. Studies suggest that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited. It occurs more commonly among people with northern European ancestry. People of African, Asian, and Hispanic backgrounds are also diagnosed with MS, however, the incidence is much lower.

What about our camp program?

Teen Adventure Weekend is an innovative four-day program for teens with multiple sclerosis, ages 11-18, in Exeter, Rhode Island. The recreational and team building program includes activities such as kayaking, sailing and even rope climbing. The program is free although space is limited. Applications are mailed in early March. For information email maria.milazzo@stonybrook.edu.