Living with Multiple Sclerosis

I was diagnosed with Multiple Sclerosis in 1984 and have been on disability ever since. MS is a disease that affects every aspect of your life and touches every corner of your world. There are more than 2,500,000 MS patients throughout the world. It is an insidious neurological disease striking adults in the prime of their life, and its course is unpredictible. There is hope on the horizon as new treatments have been developed and great strides are being made in research areas.

While the disease is often debilitating, your attitude can help you deal with the daily ups and downs of living with MS. There are good times and bad, but I choose to be a fighter. I may have MS, but it DOES NOT have me!!!

I would not wish MS on anyone, and I really wish I didn't have to deal with it, but I am thankful for the lessons I have learned along the way. Through the hard times, I have learned to lean on my God, more than ever before. I have learned to appreciate all I do have. I'm still struggling with learning to set limits!

Humor is Essential!

Humor is a wonderful aid to our emotional and even physical well-being. It's not always easy, but a smile and a giggle can work wonders!

Here's a little MS humor, not meant to offend, but to make you smile:

"You know you have MS.....when 'bouncing off the walls' has a whole new meaning."

Unknown

"You might have MS if.....You haven't had anything to drink, but you can't pass a field sobriety test."

Anonymous

"You might have MS if......The phrase 'shop to you drop' becomes a reality after only one store."

Anonymous

"You might have MS if.....You can't look up without falling down."

Anonymous

What is Multiple Sclerosis

Multiple sclerosis is a chronic disease affecting the central nervous system. It's symptoms may run the gamut from slightly blurred vision to complete paralysis. It is not contagious, and it is rarely fatal. But it is unpredictable.

An estimated third of a million Americans have multiple sclerosis, with nearly 200 new cases diagnosed every week.

How is it caused?

A fatty substance caused myelin surrounds and protects the nerve fibers of the brain and spinal cord (the central nervous system). In multiple sclerosis, or MS, an immune system reaction causes a breakdown in the myelin layer, or sheathing. When any part of this myelin sheathing is destroyed, nerve impulses to and from the brain are distorted or interrupted.

The result is MS: multiple because many areas of the brain and spinal cord are affected; sclerosis because "scleroses" or hardened patches of scar tissue may form over the damaged myelin.

What are its symptoms?

The symptoms of MS may include tingling, numbness, slurred speech, blurred or double vision, muscle weakness, poor coordination, unusual fatigue, muscle tightness or spasticity, problems with bladder, bowel or sexual function, and paralysis. Occasionally, mental changes such as forgetfulness or confusion may occur. These symptoms may appear in any combination, may come and go, and may vary from very mild to very severe.

What is the general pattern?

At present, there is now way to predict when or even if attacks of the disease will occur. Symptoms not only vary greatly from person to person, but may also vary from time to time in the same person.

The most typical pattern of MS is marked by periods of active disease or attacks, also called exacerbations or relapses, followed by quiet periods called remissions.

Some people have few attacks, and little if any disability accumulates over time. Most have what is called "relapsing-remitting" disease. This means they have exacerbations, which take place unpredictably, followed by periods of partial or total remission, which may last months or even years. Still others experience a progressive disease course with steadily worsening symptoms. The disease may worsen steadily from the onset ("primary progressive MS") or may become progressive after a relapsing-remitting course ("secondary progressive MS"). But people with progressive MS may still experience attacks and partial remissions. Thus, the disease ranges from mild to intermittent to steadily progressive.

Because MS affects individuals so differently, it is difficult to make generalizations about disability. Statistics suggest that two out of three people with MS remain able to walk over their lifetimes, but many of them will need a cane or other assistive device and some will choose to use a scooter or wheelchair to conserve energy.

Who gets Multiple Sclerosis?

MS is most often diagnosed in people who are in their twenties or thirties--young adults who are just starting their lives. Women develop it at a rate almost double that of men. The disease is more frequestly found among people in colder climates. Scientists don't understand why this is so, but studies strongly suggest that where a person was born and lived during his or her first fifteen years strongly influences the likelihood of developing MS.

Studies also indicate that genetic factors make certain individuals susceptible to the disease, but there is no evidence that MS is directly inherited. Other unknown factors are involved.

Is it easily diagnosed?

MS is not always easy to detect or diagnose because symptoms tend to come and go, because other diseases of the central nervous symptom have some of the same symptoms, and because no single neurological or laboratory test can confirm or rule out MS. Thus people may be told they have "probable" or "possible" MS.

Recent advances in medical imaging, particularly MRI (magnetic resonance imaging), are helping to clarify diagnosis. To make a conclusive or definitive diagnosis, two factors must be shown:

1. There must be evidence of many patches of scar tissue in different parts of the central nervous system.

2. There must have been at least two separate exacerbations of the disease.

A definitive diagnosis can take several months. Sometimes it takes years.

Can Multiple Sclerosis be treated?

Traditionally, steroids and ACTH have been used to treat acute exacerbations, also called relapses or attacks. Today, there are three new, federally approved medications that also slow the rate of relapses, and limit MS activity in the brain, as seen on MRI scans. One of these drugs slows down the rate of increased disability. All three slow the natural course of MS.

There are also medications that provide relief for symptoms. Spasticity, bowel and urinary distress, pain, fatigue and other problems may be eased with medication.

Physical therapy, exercise, vocational and cognitive rehabilitation, attention to diet, adequate rest, and counseling to decrease emotional stress may also be invaluable in helping a person remain independent and able to lead a full life. Prompt management of symptoms is important. They should be discussed with a knowledgeable physician.

Can Multiple Sclerosis be cured?

The answer is no--not yet. The new medications do not cure MS. The cause and cure are the subject of intensive worldwide research. Some 200 research grants and fellowships funded by the National MS Society go forward each year. Knowledge about the diseases of the central nervous system is growing quickly, many clinical trials are in progress, and there is an air of optimism among MS researchers everywhere.

Information from:

"What is Multiple Sclerosis"

Brochure BR 3009

National Multiple Sclerosis Society

pub. March 1998