When Maria Martin was diagnosed with relapse-remission multiple sclerosis, the news was actually a relief. At last, after a long period of not knowing, she finally had a name to attach and a reason for the visual changes she had been experiencing. In order to share with others some of the important information she has learned throughout her MS journey, she conducted an interview recently for the Talking Information Center with Dr. Arthur Safran, a neurologist specializing in MS and a member of the MS Society of Greater New England who sits on its Clinical Advisory Committee. Also joining them was David Young-Hong, The MS Society of Greater New England’s Associate Vice President of Clinical Programs and Direct Services. It proved to be 30 minutes chockfull of information—with a liberal dash of inspiration as well.
First, it’s important to understand the definition of MS. It is a chronic, usually progressive disorder affecting the central nervous system (the brain and spinal cord, not the peripheral nerves in the arms and legs). Although the cause is unknown, there is an immune system component.
There are several types of MS:
Relapsing-remitting. This is characterized by an attack and then some level of recovery.
Progressive. This form gradually worsens over time.
Relapsing-progressive. This is a progressive illness interrupted by bouts of attacks from which patients make partial or complete recoveries.
Secondary progressive. Characterized by a series of attacks and remissions which eventually evolves into the progressive form.
Neuromyelitis optica: found mostly in Asia, this form of the disease does not affect the brain and is focused in the spinal cord and optic nerves.
Although it’s important to be aware of these different types, Dr. Safran stated that this should not be our primary concern: “The most important thing isn’t the kind of MS that you have, but rather what it has done to you and what limits it may produce. Those are measured by a Kurtzke Scale, named after the person who described it. . . . As an average, it takes about 25 to 30 years to develop what’s called a Kurtzke Scale Six, that is to say the point where someone might have to use a cane to get around.”
When Dr. Safran graduated from medical school 52 years ago, the MS prognosis was grim and treatment options simply didn’t exist. Part of the reason is the tricky nature of the disease, which can present itself in numerous ways. Even today, there is no specific test that will tell you whether you have MS.
It is the initial symptoms that bring people to their doctors’ offices. Potential signs of MS include sharp pains, numbness, walking problems, bladder control and emptying difficulties (especially in women), weakness, clumsiness and visual changes.
The visual changes that occur with MS are called optic neuritis, an inflammation of the optic nerve. This can be one of the first symptoms a patient notices, or it can occur long after an MS diagnosis. It is characterized by a visual loss that comes on quickly, usually in a day or two, and can be very uncomfortable. The majority of patients see improvement over time, but it can recur. Immediate treatment with a cortisone derivative steroid can be very effective in minimizing current symptoms and lowering the likelihood of future recurrence.
Many of these symptoms, including visual changes, are things that all of us experience to some extent or another throughout our lives. That can lead us to either dismiss things we should pay attention to or become overly worried about something that’s actually normal. Dr. Safran elaborates: “One of the great troubles with this illness when someone has developed it is the series of false alarms that people get. All of us every day have neurologic symptoms. Numbness someplace, you scratch it and it goes away. Or you don’t see something sharply then you blink your eyes a couple of times and it tends to come back. If someone has multiple sclerosis, it’s very common for them to think that they’re having a whole lot of attacks when really they’re just living a normal life. But their attention to it is so great; they’re hyper-vigilant, and it causes a lot of difficulty for people.”
Back in the days when there were no medical treatments for MS, doctors generally adopted a paternalistic attitude towards diagnosis, often not telling their patients for many years that they actually had the disease. That is no longer the case. Patients are now at the center of their own care, partnering with their doctors and other resources to learn as much and gain the highest possible quality of life.
“It’s important to let people know that just because they have been told that they have multiple sclerosis, it doesn’t mean that they’re going to be disabled,” Dr. Safran explains. “And it certainly doesn’t mean that they are going to be disabled in some way that’s going to prevent them from living a good life. The depression that can ensue from a poorly delivered message is something that we all have to be aware of.”
If a patient and her doctor suspect MS, the strategy is to rule out other possibilities. An MRI is done, and there may also be blood tests to check for certain antibodies that show up in about half of all MS patients. Dr. Safran stresses the importance of having an MRI done and read by someone who knows the proper techniques for spotting MS indicators.
Once a diagnosis of MS has been made, there are several treatment possibilities. What is ultimately prescribed depends on the way the disease is manifesting itself and on what side effects the patient is willing to put up with. In particular, there are several options to treat the relapsing-remitting form of MS. These interventions can reduce the frequency of attacks and can even delay the onset of full-blown symptoms. In some instances, future attacks can be totally prevented. Today, medications can be either injectible or oral. It is very important for the patient to discuss all of the options and their side effects with the neurologist. This is also where speaking to other MS patients can be an invaluable tool.
That’s where the National MS Society comes in. Founded in 1946, its mission is to work toward a world free of MS. To that end, this organization mobilizes resources to drive research, addresses the challenges experienced by MS patients, raises funds, works closely with neurologists and clinics and increases public awareness about the disease. Even as recently as 1993, there were no FDA-approved treatments for MS. Today, thanks at least in part to the efforts of the MS Society, there are ten.
The New England chapter of the MS Society consists of the states of Massachusetts, Maine, New Hampshire and Vermont. They provide information and referral, furnish small financial assistance for patients needing short-term help, and offer educational and social programming. In addition, they have a small care management program aimed at helping people with MS to maintain safety and autonomy in their communities. Currently, there are about 1,800 members who have contacted the MS Society of Greater New England and reported that they have this condition.
One of the ways the MS Society raises public awareness is through MS walks. David elaborates: “Our walk season is coming up. We have walks starting as early as April, running through to probably mid-June. Then we have a series of fall walks that happen in September all throughout our chapter area of Massachusetts, Maine, New Hampshire and Vermont. It’s a great way for people to come out and participate in something that will directly impact, through the funds that you raise, the mission and put money toward the programs and services as well as the research that the society funds. And it’s also a great way to come out and network with other people, kind of get some social connections going on and meet some of the MS Society staff.”
David also talked a bit about himself and what brought him to this field. An occupational therapist by training, he did some work at The Boston Home, a facility in Dorchester specializing in long-term care for patients with progressive MS. When the MS Society position became available, he jumped at the opportunity.
“Somebody in one of the conferences I attended said . . . “MS is a really crappy way to meet some really fantastic people.” And it really is the truth,” David enthused. “I really have met so many people who have showed so much resilience, and also professionals like Dr. Safran who are very dedicated beyond their work day.”
For his part, Dr. Safran has much to say about how focusing on MS and how it has affected his patients has changed his life: “It caused me to make much deeper personal relationships with patients and staff because you care for people and care with people over a long period of years and they become your close friends. . . It also engenders an enormous amount of hope because the changes that we’ve seen over the last 15 years are breathtaking. And one hopes that people will continue to make this kind of progress.”
If you would like more information on MS for yourself or for someone you know, contact the MS Society New England Chapter by calling 600-344-1867. You will be connected to an MS navigator who will answer your general questions and put you in touch with resources in your local area.
Suzanne Wilson