Multiple sclerosis is the ultimate player. First you see it, then you don’t. If you are confused about MS, you are far from alone.

First, what it is not: multiple sclerosis is not the same as muscular dystrophy or cerebral palsy. All people with MS are not in wheelchairs. It’s not a psychological problem.

So what is it?

1. MS is a neurological disease in which lesions form in the central nervous system, interrupting the transmission of signals to the rest of the body.

2. Relapsing/remitting MS, the most common form at onset, causes flare-ups followed by periods of remission. In addition, there are several types of progressive MS in which symptoms continue to worsen over time.

3. Symptoms vary greatly from patient to patient (and from day to day) and include fatigue, numbness, visual impairment, slurred speech, difficulty swallowing, cognitive impairment, tremors, vertigo, pain, lack of coordination, paralysis, and blindness. From the mildest of symptoms to all out disability and everything in between, a typical case of MS is impossible to define. Though symptoms are often invisible, this is a serious medical condition.

4. MS is more common in women than men. Most people are diagnosed between the ages of 20 and 45. Due to MRI, more children are being diagnosed with MS. We don’t know the exact numbers because MS is not tracked by the Centers for Disease Control or any other federal agency.

5. There is currently no single definitive test for MS. Rather, it is diagnosed through patient and clinical history, a series of tests, and systematic elimination of other disease and conditions that mimic MS.

6. MS is not contagious. A genetic link is suspected. According to the National Multiple Sclerosis Society, the risk of developing MS in the general population is 1/750, rising to 1/40 in anyone who has a close relative (parent, sibling, child) with the disease, but even though identical twins share the same genetic makeup, the risk for an identical twin is only 1/4—which means that some factor(s) other than genetics are involved. Research is ongoing regarding a wide variety of theories, one being that it may be a combination of genetics with an environmental trigger.

7. There are several disease-modifying drugs thought to slow progression, in addition to treatment for individual symptoms and relapses. A healthy diet and exercise are crucial to overall health.

8. MS is not a psychological condition, although depression is a common symptom. With its on again, off again nature and ever-changing symptoms, the emotional toll can be a hefty one.

9. MS itself is rarely fatal, but complications due to MS can be.

10. Some people with MS must leave the workplace due to severe symptoms. People living with MS who are forced into the individual insurance market are often rejected or priced out of the market, creating a serious financial hardship. Medications currently available to treat MS have no generics and are exorbitantly priced, forcing many patients to forgo their desired medical treatment.

11. MS has a profound effect on those who must live with it, or in its wake. Fortunately, many people with MS continue to enjoy an active lifestyle. We may have MS, but we are so much more.

MS Information and Resources:

Multiple Sclerosis Association of America

Multiple Sclerosis Foundation

National Multiple Sclerosis Society

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.