Advanced MS – National MS Society
Aaron Miller, MD, describes the available treatment options and resources for people living with advanced MS, and highlights the ongoing research efforts to repair the damaged nervous system.
Overview
Although we have treatments to manage the disease course, they are only partially effective, which means that some people’s MS will worsen in spite of everything they and their doctors do to try and prevent it.
Many people ask themselves “Why did this happen? Did I choose the wrong doctor or the wrong medication…did I follow the wrong diet or the wrong exercise program…did I get too stressed out at my job?”. But the fact is, MS progresses because that is the natural course of the disease.
While researchers are working and collaborating to identify new and better strategies to stop that progression, people whose MS has become more disabling—and their family members and friends—need information about how to manage the challenges they face.
Planning for the future
Although MS is a progressive disease for many people, the rate of progression differs from one person to another. The hallmark of MS is its unpredictability—which means that the doctor can’t predict with any certainty how far or fast a person’s MS is going to progress or what the outcome is likely to be. However, there are some factors that seem to suggest a better or worse prognosis.
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Several studies have shown that people who have few relapses (also called exacerbations or attacks) in the first several years after diagnosis, long intervals between relapses, complete recovery from relapses, relapses that are sensory in nature (i.e., numbness, tingling, visual loss), and nearly normal neurological examinations after five years tend to do better.
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People who have early symptoms of tremor, in-coordination, difficulty in walking, or who have frequent attacks with incomplete recoveries, early development of neurological abnormalities, or more lesions on MRI early on, tend to have a more progressive disease course.
Taking these factors into account can help you and your family plan more effectively for the future.
Identifying options
The key message to anyone living with advanced MS is that there is always more that can be done to make the situation better. If your doctor has “nothing more to offer,” it’s time to find another doctor (.pdf) – who will partner with you and other members of the healthcare team to manage yoursymptoms effectively and maintain your quality of life. The National MS Society (1-800-344-4867) can recommend healthcare professionals with knowledge and competency in MS care, as well as other resources in your area.
Learning to redefine control and independence
Sometimes MS symptoms can progress to the point that they significantly interfere with daily activities. Changes like this can threaten your self-confidence and feelings of self-worth. When this happens, remember that maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before.By allowing yourself to do things differently, you gain access to the world of assistive technology (AT)—an array of energy- and labor-saving tools and devices that allow you to stay active and productive. Rehabilitation professionals can help you navigate the world of AT and suggest ways to modify your environment at home and at work to optimize control and independence.
Dealing with emotional ups and downs
Depression and other mood changes are common in MS, and grief is a normal reaction to the changes and losses that can accompany advanced MS. Getting the support you need to deal with these emotional challenges is essential to maintaining your quality of life.
Avoiding complications
The information showing above was provided by the National Multiple Sclerosis Society
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