Multiple Sclerosis Myths versus the Truth - dummies

Multiple Sclerosis Myths versus the Truth

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

Myths about multiple sclerosis (MS) abound, and chances are if you’ve heard them, you haven’t heard much that was good. In fact, you may have heard only about wheelchairs, nursing homes, or even death — not a pretty picture. You tend to hear more about the bad stuff because the good stuff isn’t as visible.

MS myth: MS is fatal

Maybe you’ve heard about someone who died from MS. The fact is that most people with MS die from cancer, heart disease, and stroke — just like everyone else. Statistically speaking, the MS life span is very close to normal. But, of course, some situations can shorten a person’s life, including a very rare and rapidly progressive form of MS that leads to an early death.

Sometimes severe complications of MS, such as serious infections that don’t respond to treatment, can eventually be fatal, too. And severe depression that isn’t treated can sometimes end in suicide. So, be sure to let your doctor know about any big changes in your mood.

MS myth: Everyone eventually needs a wheelchair

Even though they may need to use a mobility device, such as a cane or motorized scooter, to help with balance or fatigue, the fact is that two-thirds of people with MS remain able to walk. Think of it this way:

  • Approximately one-third of people with MS have a relatively mild disease course with manageable symptoms and little or no disability.

  • Approximately one-third of people have a moderate disease course with more bothersome symptoms and a greater disability as time goes on.

  • Approximately one-third of people experience a severe course that’s significantly more disabling.

So, although most people with MS don’t need a wheelchair on a full-time basis, doctors currently have no way to predict which path a person’s MS will take.

MS myth: Having a relapse means your medication isn’t working

The available medications can’t cure MS or stop the disease in its tracks. This means you’re likely to have some relapses (hopefully fewer) and experience some disease progression (hopefully less) even though you’re faithfully taking your medication.

Remember, having a relapse or some disease progression doesn’t necessarily mean that the medication isn’t working or that you need to switch medications. You and your doctor can decide together when and if it’s time to try something else.

MS myth: If you can’t walk, your life is over

For those who fear being unable to walk more than anything else in life, nothing we say is likely to reassure you. But we’ve known countless men and women who have stayed mobile, productive, adventurous, and involved while sitting down. They work, play, travel, make love, make babies, and make a life.

If you want to be convinced, we urge you to meet some of those folks for yourself — in self-help groups, at educational meetings, or in your community — and get to know them. They may even tell you that it’s easier to smell the roses when you’re a little bit closer to the ground.

MS myth: “Natural” treatments are safer

Don’t be seduced by advertising for “natural” treatments. Even though prescription medications are strictly regulated in this country, dietary supplements aren’t. For example, the manufacturer of a prescription medication can’t make any claims about its product that haven’t been proven in rigorous clinical trials, but the manufacturer of a supplement can make any claims it wants — calling the supplement “safe,” “healthy,” “effective,” or anything else to catch your eye and pocketbook.

And the fact that something comes from nature doesn’t make it safe, non-toxic, or free of side effects. Something natural can interact with other supplements or your prescription medications in ways that aren’t healthy or safe.

MS myth: Scientists aren’t making any progress

Actually, progress has never been faster! In the 1970s, scientists found new and better ways to study the immune system. In the 1980s, magnetic resonance imaging (MRI) technology gave doctors the first picture of the damage done by MS to the brain and spinal cord. This ever-expanding technology provides an amazingly detailed picture of the underlying disease process and a sensitive way to evaluate the effectiveness of new treatments.

Researchers are collaborating on a hunt for MS genes. And the research into how damaged tissue in the central nervous system may be repaired has moved into high gear. For a glimpse of the exciting world of MS research, check out the work of The Myelin Project, the Accelerated Cure Project, and the Nancy Davis Center Without Walls as well as the National MS Society’s ever-changing News Page.