How do I know that my treatment is working?
Unlike high blood pressure or diabetes, there are no instruments to measure your multiple sclerosis (MS) level. Your doctor finds out how you’re doing by asking questions and possibly ordering an MRI.
“I ask a patient if they’ve had any new symptoms in the past year, if any symptoms have worsened, or is there anything they could do a year ago that they can’t do now,” says Dr. Saud Sadiq, director and chief research scientist at Tisch MS Research Center in New York City. “If the doctor sees no change in your mental status or muscle strength, he may also order an MRI, which will tell him whether there are new lesions on the brain or spinal cord, or evidence of disease progression. If there’s nothing new in your symptoms, examination, or MRI, then the treatment is working.”
Should I change my medication?
If you’re obviously not doing well, of course, alternative treatment options need to be explored.
“But even patients who are doing well might need more aggressive treatment,” says Dr. Karen Blitz of Holy Name Medical Center.
“If the MRI is active, the patient should be treated more aggressively, no matter how they feel,” she says. “Just like cancer, which is treated aggressively to prevent it from spreading, MS can be a very bad disease and aggressive treatment prevents further deterioration. Often patients are told they have a mild form of the disease and they can watch and wait; but the earlier MS is treated, the better patients do.”
If my MS medication isn’t relieving my symptoms, what will?
Your doctor needs to treat each symptom individually. Corticosteroids are used to shorten attacks. Muscle spasticity or stiffness can be managed with stretching exercises and medications like tizanidine. Dalfampridine (Ampyra) can help walking speed, as it enhances conductions of nerve signals. Fatigue may improve with aerobic exercise and medication such as modafinil (Provigil), which increases wakefulness and may also improve the fatigue associated with MS. Modafinil is prescribed off-label, meaning it is not approved specifically to relieve fatigue in MS and some insurance companies will not pay for it.
Bowel problems are not uncommon and can be managed with diet and fluid changes, suppositories, or medications. Burning or painful sensations may respond to a variety of medications including amitriptyline (Elavil) and gabapentin (Neurontin). Cognitive and speech problems often respond to rehabilitation. Aubagio (teriflunomide) can help treat active relapsing-remitting MS (RRMS) that is neither highly active nor rapidly evolving severe RRMS.
Should I do physical or other therapy?
Yes, if you are suffering any reductions in function as a result of your MS. Physical therapy won’t change the course of your MS, but it may improve other factors such as fitness, mobility, and memory, and make you more independent. It can help strengthen any muscles weakened by lack of use and improve balance as well. Occupational therapy improves independence in daily living.
If you’re having problems with eating, dressing, or grooming, occupational therapists can help with coordination and strength, and recommend equipment for your home or workplace to help with daily life. Speech therapy will help those who have problems speaking or swallowing. There is even cognitive rehabilitation to improve memory, attention, and problem solving, which may be affected by the loss of myelin in the brain.
Should I do more exercise?
Yes. More research is showing the benefits of exercise and other rehabilitation strategies in improving quality of life, safety, and independence in MS patients. Exercise contributes to well being and helps with sleep, appetite, and bowel and bladder function.
“Exercise has a lot of benefits for MS, especially for management of fatigue,” says Dr. Gabriel Pardo, director of the Oklahoma Medical Research Foundation Multiple Sclerosis Center of Excellence. “Patients think that working out will make them more tired, but the opposite is actually true. In addition, when patients have issues with muscle tone, spasticity, and ambulation, exercise will keep muscles limber and preserve strength.”
Are there lifestyle or dietary changes that might help?
Sometimes, moving to a cooler climate can help. Some patients are sensitive to heat. Lots of diets have been put forth for MS, but none have proven effective or necessary. The only vitamin that has been proven to help is vitamin D. Studies on other vitamins, such as vitamin E, show promise.
Am I going to get worse?
Your doctor should be able to give you a good indication of your prognosis. There are different types of MS, some of which are more progressive than others. Even if you have primary progressive MS, there is a lot your doctor can do to minimize it. Don’t be afraid to research what the latest treatments are so you can ask your doctor about them.
Are there alternative or complementary therapies that might help?
None have been scientifically proven to help. The danger of using them is that patients might stop using prescribed treatments, which can certainly cause their MS to get worse. However, some people find that alternative therapies such as acupuncture, hypnosis, massage, and meditation help reduce stress, manage symptoms, and make them feel better.