They may not be as widely known, but physical challenges such as hearing loss can be part of the MS picture.
by Lori De Milto
When Jeannie, the star character of the 1960s sitcom “I Dream of Jeannie,” waved her hands about, she was using her magical powers as a genie to help astronaut Tony Nelson, who had freed her from her bottle, recalls Dara Brown, a 40-year-old Baltimore resident. But when Brown’s hands started moving on their own, it wasn’t intentional or helpful. “If I went to grab something, my hands would fly all over the place, like Jeannie,” she says.
Brown’s uncontrollable shaking, or tremor, is one of the less-common symptoms of multiple sclerosis. It started six years after she was diagnosed with MS in 2006 at age 30. At first, her handwriting looked funny and her fingers hit the wrong keys when she tried to type on the computer. Within about a month, her hands shook so much that she couldn’t feed herself.
Most tremors caused by MS are action tremors, like Brown’s, in which the tremor starts when the person moves; it usually affects the hands and arms. Brown’s neurologist prescribed an anti-seizure medicine called carbamazepine, which she takes before she eats. “It’s not a cure, but it helps,” she says.
Brown’s happy that it does: Tremor is one of the most difficult MS symptoms to treat. “Drugs that typically work for essential tremor (another type of neurologically induced shaking) or Parkinson’s disease tend not to work with MS tremor,” says Dr. David E. Jones, a neurologist at the James Q. Miller Multiple Sclerosis Clinic at the University of Virginia Health System, and an assistant professor of neurology at the University of Virginia School of Medicine. “Most of the time, the improvement from treatment is mild.” But other approaches, such as physical therapy or using weights on one’s wrist, can often help.
Tremor is just one of several symptoms considered to be “less common” among people with MS, even though 25 percent to 58 percent of people living with the disease experience it. And many of the other less-common symptoms associated with MS can be successfully treated, either with medications, technology or other treatments. The other less-common symptoms of MS are headache, breathing problems, hearing loss, seizures and itching. (See chart at right.)
Doctors don’t know why some people have these “less-common” symptoms and others don’t. “Presumably the basis for this is location of the lesion,” notes Dr. Jones, but it remains unclear why some locations in the brain and spinal cord are affected more commonly than others.
Stephanie Crystal Wolfstone-Francis started having trouble hearing in her mid-30s, a symptom she and her doctor believe is due to MS.
“I struggle to understand what people are saying,” says the 68-year-old resident of Auburn, Maine, who wasn’t officially diagnosed with MS until about 15 years ago. In meetings, Crystal Wolfstone-Francis uses either a personal amplifier or a computer-based service that translates spoken words into text that she can read.
However, most people with MS who have hearing loss experience it differently than Crystal Wolfstone-Francis, whose hearing loss was progressive. Its onset is usually sudden, and can arise during an MS relapse or in hot weather. It typically occurs in one ear only and “the hearing acuity tends to get better over time,” says Dr. Jones.
The other 4 symptoms
The other uncommon symptoms, like most aspects of MS, vary from person to person. The good news is that treatments are available to help alleviate all of them.
Headaches may be migraines or tension headaches related to spasticity. Medications, physical therapy and environmental changes can help.
Breathing problems can include shortness of breath and difficulty breathing deeply. A pulmonologist may recommend medications, and a respiratory therapist may provide breathing exercises or other treatments.
Sudden, intense itching can occur anywhere on the body or the face, and while this can be exasperating, several types of medications can reduce or take away the itch.
Seizures can occur in people with MS. In many people who are affected, the seizures tend to be mild. They can involve brief episodes of unconsciousness or loss of awareness, and may or may not include uncontrollable movements of the arms and legs, or repetitive movement (like rubbing hands). Some individuals experience generalized seizures, which can affect the entire body. Again, medications are usually quite successful in limiting these.
Is it really MS?
Many things can cause tremor, headache, breathing problems, hearing loss, seizures or itching. “Just because you have MS and one of these symptoms, that doesn’t necessarily mean that MS is causing the symptom,” says Dr. Jones. At the same time, any of these symptoms could be MS, even if friends with MS don’t have them, or a doctor doesn’t think MS is the cause. Dr. Jones advises seeing a neurologist experienced in treating people with MS to determine whether a less common symptom is or isn’t due to MS, and to get the appropriate treatment for it. You can help by keeping a diary about what is happening and when.
“Put MS in its place so it doesn’t become an all-consuming part of your life. It takes a lot of effort to do this, but it will improve your outlook, and allow you to do the things you want to do more easily,” says Dr. Jones.
Lori De Milto is a Sicklerville, New Jersey-based freelance writer.
Learn more about MS symptoms.