When it comes to understanding, preventing and treating chronic diseases, multiple sclerosis (MS) ranks among the most challenging. The word “multiple” is apt in more ways than one.
Various suggested causes include early-life exposure to certain viruses or toxic agents, geographic and dietary influences, inherent immunological defects and underlying genetic susceptibilities.
MS is highly unpredictable. Rarely are any two patients alike in the presentation, duration and progression of symptoms; even the underlying cause of disability in MS is being reconsidered. And rarely do any two patients respond in the same way to a given therapy, be it medically established or alternative. Trial and error is the name of the game, experts say, because it is often not possible to know in advance what will work best for individual patients.
Multiple sclerosis is an inflammatory autoimmune disease of the central nervous system, in which the body’s own immune system attacks the myelin sheath that insulates nerves in the brain and spinal cord, resulting in irreversible damage to the axons (nerve fibres) that transmit nervous system signals. It is typically diagnosed between ages 20 and 40, but evidences indicate that it starts years before the first symptoms of weakness or disability appear.
In most patients, the disease starts out, and may stay indefinitely, in a relapsing-remitting form that results in gradual progressive disability but is rarely life-threatening.
The goal of therapy is to prevent relapses and the worsening of symptoms. As symptoms can disappear on their own, large, long-term, scientifically controlled clinical trials are needed to determine what works and what only seems to work initially. The five disease-modifying agents include Avonex, Betaseron, Copaxone, novantrone and Rebif.
In her book Multiple Sclerosis: An Essential Guide for the Newly Diagnosed, Margaret Blackstone, a medical writer and MS patient, describes Avonex, Betaseron and Rebif as interferon-based treatments administered by injection, which calms an overactive immune system.
Copaxone, also taken by injection, is an antigen that fools the body into thinking it is the protein in myelin. It is meant to protect the myelin from an immunological attack. novantrone is an immunosuppressive cancer drug used to treat progressive MS.
A sixth drug, Tysabri, a monoclonal antibody that prevents immune cells from entering the brain, is given intravenously every four weeks. Tysabri was removed from the market in 2004 because of serious complications in three patients. It is now back in clinical trials and available through a special programme to those who had found it to be the best treatment for their disease, but its makers recently posted a warning to doctors that it has been found to cause serious liver damage in some patients.
Therapy and alternatives
Up to 20% of patients have a relatively mild form of MS and may not need drug treatment, but it is impossible to predict who they are. Blackstone states that it is important for patients to recognize an impending relapse—common indicators are fatigue and “a heightened sense of vulnerability, as if the person can tell something bad is going to happen”—and not try to work through a relapse. “It’s better to rest” and “avoid engaging in strenuous activity,” she suggests.
If relapse symptoms warrant, corticosteroids can be used to speed recovery and possibly to delay or prevent another relapse. The other critically important aspect of therapy involves managing symptoms. Depending upon the stage and severity of the disease, symptoms may include fatigue, dizziness, vision changes, spasticity, weakness, tremors, numbness, balance problems, pain, depression, constipation and speech difficulties.
Measures may be taken to reduce disability from these symptoms, such as physical, occupational and speech therapy and psychotherapy; avoiding heat; getting adequate rest; and learning to listen to one’s limitations.
At one point or another, most MS patients also seek out, and often benefit from, complementary and alternative medicine, such as acupuncture, dietary supplements, biofeedback, meditation, guided imagery, tai chi, cooling therapy, yoga, therapeutic touch and electromagnetic therapy.
©2008/The New York Times