Multiple sclerosis (MS) can be a difficult disease to live with. Still, many people with MS lead very exciting and full lives. This article explains some of the ways they overcome the difficulties of MS.
MS is a disease with many symptoms, and managing those symptoms is the key. Experts say that there are so many ways to deal with different issues that arise; every person has to find out what works for them individually.
MS is a disease in which inflammation causes damage to the protective covering that surrounds nerve cells. When this nerve covering is damaged, nerve signals don’t work as well as they should. At least 400,000 people in the United States have MS.
It is more common in women than men.
MS is a chronic disease, but there are many things that can help a person with MS function their best.
The illness is characterized by periods of flare-ups and remissions (time when the person feels their healthiest). There are many symptoms of MS and many ways to help deal with these symptoms.
In some cases, a person with MS is having a health issue and doesn’t realize it’s related to MS, according to Rosalind Kalb, PhD, VP of Clinical Care Programs at the National MS Society. “People have to be educated about the kinds of symptoms MS can cause,” she said in an interview. “There are so many symptoms, and they are so variable from one person to another, from one time to another.”
One thing that is helpful is to keep a log of health issues that are bothering you, Dr. Kalb said. People with MS may see their neurologist every six months, and should bring their log to that appointment. They can discuss any new problem, or something that is happening rarely that they may not have considered as important, such as problems sleeping or a bit of blurred vision, she said.
Fatigue is a very common problem for people with MS. Some patients will be constantly tired for a period of time, while others may find their fatigue peaks at a certain time every day, Dr. Kalb noted. “Plan activities and prioritize what you will do,” she suggested. “I love naps. I think they’re valuable for everybody.”
Sleeping at night is often less than restful for people with MS, she said, for a variety of reasons, such as needing to urinate often or having feet that are restless. For these people, naps are a great idea, provided they are not too lengthy and likely to lead to a pattern of being unable to sleep at night. Even just resting for 20 or 30 minutes can help someone feel refreshed, she said.
Avoid being overly stimulated, added Matthew McCoyd, MD, assistant professor of neurology at Loyola University Medical Center in Illinois. "If you can't sleep, read." He suggested that people avoid watching television late at night and having drinks containing caffeine.
Heat is often an issue for people with MS, Dr. McCoyd noted. Patients may have Uhthoff's phenomenon, which is sensitivity to heat experienced by many people with MS. The heat adds to the fatigue, Dr. McCoyd said. He recommends energy conservation and cooling vests, which are often worn by people with MS to help keep them comfortable.
As a last resort, he prescribes medication, but he would rather people try other non-medicinal methods first.
Difficulty with walking is another regular issue for people with MS. This issue may be caused by weakness, loss of balance or loss of sensation in the feet, Dr. Kalb explained. Sometimes medications can be useful to manage the stiffness or spasticity, she said. Physiotherapy is another helpful resource. Sometimes exercises help, as can tools like walkers, canes or wheelchairs.
Dr. Kalb likes to tell the story of a man who came to the clinic and told her that he carried his MS toolbox with him. He brought her to his car, opened his trunk, and there was an array of items — a wheelchair, a walker, etc. Depending on how he felt each day, he would take out the tool he needed, he explained.
Dr. McCoyd said a person has to be sure to have the proper size of equipment, as using a cane that is too short, for example, can lead to back pain. He suggests patients see physiotherapists to obtain items they need in the proper size. He recalled one man who bought a powered scooter only to find he couldn't get it up the stairs and into his house. It's a good idea to speak with a physiotherapist before buying items, he said.
Visual problems often plague people with MS, Dr. Kalb said, but they often don't last.
Optic neuritis (inflammation of the nerve controlling vision) can lead to patchy or blurred vision or suddenly being unable to see colors, she said. Steroid medications often help to bring the inflammation down and spare vision, but patients may experience residual problems, Dr. Kalb said.
When a person with MS has visual problems, they should see their regular physician who may suggest a low-vision specialist, she said. Other times a person may have double vision which can be helped with a prism placed in their glasses, she added.
Another issue common to people with MS is dysfunctional bladder, Dr. Kalb said. The bladder may constantly contract so urine cannot be stored, leading to a problem known as incontinence (loss of bladder control).
Another problem may be that the bladder fails to empty, and the patients constantly feels the need to urinate, she said. “Medications are an essential part of bladder management,” she said. Sometimes, people are taught to self-catheterize (insert a tube into their bladder to empty it). Doing this several times a day may give them the freedom to go out and do normal things without worry about having bladder issues, Dr. Kalb said.
Dr. McCoyd often refers patients to a urologist so their problem can be adequately assessed and the proper treatment recommended.
People with MS can have memory issues, Dr. McCoyd said. He suggested that patients stay both physically and cognitively active, and that they keep lists to help them remember things.
There are many other symptoms that can trouble someone with MS, but with the help of a multi-disciplinary team (a team of health professionals trained to help), most people with MS are able to function fairly well, Dr. Kalb said.
“There are tools. One day you may need one thing, another day you need another,” she said.