Medical tests and doctors' appointments are a regular part of life for people living with multiple sclerosis. Your loved one will have routine appointments with doctors and different members of their medical team, and MS tests are needed to evaluate the effectiveness of treatment plans.
Exactly which tests are required vary, usually depending on specific symptoms or the stage of the disease. MS tests can range from simple blood draws to more complicated spinal taps (where spinal fluid is extracted from the lower back with a needle) to day-long assessments of mobility and function; it's likely that as multiple sclerosis progresses, your loved one will need more and more physical help and emotional support from you in order to manage such appointments and testing regimens.
Help With Medical Appointments
People with multiple sclerosis may need some help dealing with the basic details of a doctor's appointment. You may need to participate, maybe even take notes, when symptoms are discussed, medications are changed, and orders for lab tests are written. "MS patients often have dexterity [and vision] problems, so they can have difficulty writing or filling out forms and might want a family member or someone else along who can help," says Nicholas LaRocca, PhD, vice president of health care delivery and policy research at the National Multiple Sclerosis Society.
Multiple sclerosis can also affect a person's memory, concentration, and comprehension. It may be helpful to have someone along to keep track of the details about the required tests. Most clinics provide directions for medical tests in writing, but people with multiple sclerosis may still need someone to help them follow the directions and find their way to the lab or clinic where the MS tests will be given.
Help Getting To and Managing MS Tests
People who have mobility issues can find it difficult to get around a large hospital or to get from their doctor's clinic to the lab. "If you go to a hospital for testing, very often there are very great distances that you have to travel," LaRocca says. "And although hospitals are supposed to be accessible, they are not always as accessible as you would like them to be. It may be very tiring for [someone with MS] to navigate long hallways."
Other simple acts most people take for granted, such as going to the restroom, can be obstacles for people living with multiple sclerosis. If medical tests require a urine sample, for instance, it may present a problem for someone with MS if he or she is alone. Often, the person does not want to ask for help from strangers, LaRocca says, and medical personnel are not always available to assist.
Getting onto exam tables or staying in place in front of imaging equipment can also be a challenge for people with multiple sclerosis. "Although there may be assistance around from hospital staff, most people prefer to have someone [they know] around for that," says LaRocca.
In addition to mobility problems, people with multiple sclerosis often suffer from a profound fatigue that hits in the mid- to late afternoon. "This again can be a problem in a medical facility, particularly if you have to navigate long distances," says LaRocca. "That would make it important for a caregiver to be available."
Assisting Before and After the MS Test
A caregiver may also be called upon to help a loved one prepare for a test that requires a special diet or a period of fasting, according to the doctor's orders. And though most tests do not have long-term effects, all carry a certain level of risk. Some MS tests, such as spinal taps, require recovery time.
"Often people need to spend some time lying down in bed. Many individuals get headaches after spinal taps, so the caregiver will have to be there for them during that time," says John Richert, MD, executive vice president of research and clinical programs for the National Multiple Sclerosis Society.
Such tests and appointments can be physically tiring and emotionally exhausting, especially as the disease progresses. And that can make a caregiver's role important in another way: Dr. Richert notes that an informed caregiver can make all the difference by continuing to emphasize the importance of lab and MS tests that help doctors monitor the effectiveness of MS treatment. Though they may pose some challenge, these MS tests are critical to managing the disease successfully.
Last Updated: 12/15/2008