How do I know that my treatment is working?
Unlike high blood pressure or diabetes, there are no instruments to measure your MS level. The 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, research director at Tisch MS 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-Shabbir, director of the North Shore/LIJ MS Care Center. “If the MRI is active, the patient should be treated more aggressively, no matter how they feel. 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.”
What medications can relieve my symptoms?
You need to realize that some medications don’t eliminate symptoms, but help to prevent new problems. Six months after taking a medication, patients are convinced it’s not working because it hasn’t reduced the weakness in their legs, for example, but it wasn’t mean to do that. It is working to prevent new symptoms.
If my MS medication isn’t relieving my symptoms, what will?
Your doctor needs to treat each symptom individually. Here are some strategies: Corticosteroids are used to shorten attacks. Muscle spasticity or stiffness can be managed with stretching exercises and medications such as baclofen. 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 elevates mood. 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.
Should I do physical or other therapy?
Yes, if you are suffering any reductions in functioning 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 muscles weakened by disuse and improve balance. 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,” says Gabriel Pardo, M.D., director of the Oklahoma Medical Research Foundation Multiple Sclerosis Center of Excellence, “especially for management of fatigue. 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. Of course, eating a healthy diet is good for everyone, including MS patients.
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 use search engines yourself to find out 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.