Living with multiple sclerosis: A silent struggle

As a registered nurse, Emily once took care of hospital patients in the late stages of multiple sclerosis (MS). When she was diagnosed with MS two years ago, the 44-year-old admits she had a distorted image of the disease.

“We don’t look sick, but I’m always watching to be sure I don’t stumble, so I may walk slower. We get tired a lot,” she said. “I want people to know that it is a very manageable disease.”

As both a nurse and now, as a patient, she is sharing her journey to give hope to others affected by MS — a disease she calls a “silent struggle.”

MS is a neurodegenerative disorder of the central nervous system (CNS) that affects the brain, spinal cord and optic nerve. 

As part of this chronic and unpredictable disease, the immune system attacks myelin, a protective sheath that covers nerve fibers and that disruption causes communication problems between your brain and the rest of your body. It can result in lesions, or areas of permanent damage or deterioration of the nerves.

The National MS Society says nearly 1 million people in the United States live with MS, and most are diagnosed between the ages of 20 and 50. At least two to three times more women are diagnosed with the disease than men. It is not considered hereditary and there is no known cure.

The National Multiple Sclerosis Society describes the four types of MS:

• Clinically Isolated Syndrome (CIS): The first episode of neurologic symptoms caused by inflammation and demyelination in the central nervous system.
• Relapsing-remitting MS (RRMS): The most common disease form is characterized by periods of relapses that subside with no disease progression between attacks.
• Secondary Progressive MS (SPMS): characterized by a more progressive course, with or without relapses or new MRI activity.
• Primary Progressive MS (PPMS) is described by a gradual but steady progression of MS from the onset of symptoms, with few or no relapses or remissions.

Symptoms can include:

• Fatigue
• Walking difficulties
• Numbness and tingling
• Weakness
• Dizziness 
• Cognitive and emotional changes
• Vision problems
• Bladder and bowel problems
• Muscle spasms
• Depression

MS has no known cure.

The Centers for Disease Control and Prevention is using currently studying multiple sclerosis and Parkinson’s disease using innovative methods and complex data sources to better understand neurologic disease conditions and the biggest areas of impact. 

Emily still works in a busy hospital surgical unit and day-to-day, doesn’t experience pain. She cut back on working 12-hour shifts that can be hard on her legs and feet, but she still has the stamina to keep up a busy family life, with her husband and four teenagers. 

“As a patient, I have to remember to give myself grace and be kind to myself. There is nothing I did to get this disease, but I do have power over how I go about managing it with a great and positive attitude,” Emily said. “And, I believe we are on the brink for a cure in my lifetime.”