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DAVID R. MARKS, MD: Hi, and welcome to our webcast. I'm Dr. David Marks. Being diagnosed with MS can be scary for both the patient and the family. The good news is, there are things you can do about it. The question is, how do you decide what to do about it? Joining us to talk about that are two patients and an expert. Of course, the patients are experts by this time. The first one is Jan Fuller. She has had MS for about six to eight years, and she's from Wooban, Mass., as they say in Boston. Welcome
JAN FULLER: Well said. Thank you.
DAVID R. MARKS, MD: Next to her is Maureen Beilman from Emmaus, Pennsylvania. She's both a patient and she counsels patients with MS. Thank you.
MAUREEN BEILMAN: Hi.
DAVID R. MARKS, MD: Our resident expert is Dr. Rick Munschauer, associate professor of neurology from the State University of New York in Buffalo.
FREDERICK MUNSCHAUER, MD: Hi, David.
DAVID R. MARKS, MD: Thanks for being here.
FREDERICK MUNSCHAUER, MD: A pleasure.
DAVID R. MARKS, MD: Let's start off by briefly talking about what MS is.
FREDERICK MUNSCHAUER, MD: Multiple sclerosis is a disease, and we don't know it's exact cause. But what we do know is that it's characterized by little episodes of inflammation involving the brain or spinal cord. These little spots of inflammation affect the brain, and when the brain becomes inflamed, people will experience it as a transient neurologic symptom -- difficult with vision or difficulty with numbness or tingling, strength or coordination. The spells come and go. Over time you may not recover completely from each individual episode of inflammation, and that really is what multiple sclerosis is in 80 or 90% of people who have the illness.
DAVID R. MARKS, MD: How common is it?
FREDERICK MUNSCHAUER, MD: It's relatively common. One out of 1,000 people in the United States have multiple sclerosis. If you're from my part of the country, Buffalo, New York, that may be 1 out of 800. If you're from Miami, Florida, that may be 1 out of every 1,100.
DAVID R. MARKS, MD: Why is that?
FREDERICK MUNSCHAUER, MD: We don't know. It's a very good question, but it seems the further north you go, the greater the chance of having multiple sclerosis. In fact, it's a much less common disease in Mexico or Central America than it is in North America or northern Europe. We don't really know why that's the case, but in the United States in general, 1 out of 1,000 people have MS.
DAVID R. MARKS, MD: What causes it? Is it really related to where you live?
FREDERICK MUNSCHAUER, MD: Well, we don't know. There are a lot of theories about what causes multiple sclerosis. We think there's probably something in the environment -- whether that's virus that we have yet to identify or even a bacteria -- that affects people early on in life, before the age of 14, when the immune system is relatively immature, and that sets up a chain reaction so that later on in life there are these recurrent episodes of inflammation involving the brain or spinal cord, much the same way that you can get chicken pox as a child and it can show up as shingles as an adult. We think that there may be some infection that occurs, and then the body develops an abnormal reaction to that infection that sets up a disease that we call an autoimmune disease, where the body's own immune system attacks normal tissues in the brain or spinal cord. A complicated disease process, and although we don't have all the answers about what causes it, we do know how it can be treated.
DAVID R. MARKS, MD: Can it be passed on to your kids?
FREDERICK MUNSCHAUER, MD: That's a great question, David, and the short answer is no. Multiple sclerosis is not a contagious disease, so you can't give it to your kids and you can't give it to your spouse. It is a disease, however, that may have some genetically based influences. You can inherit the predisposition to having MS. For instance, the chances of having multiple sclerosis are about 1 in 1,000. If you have a mother or a father, a brother or a sister with MS, your chances of developing MS go from 1 in 1,000 to maybe 1 out of 50. So there's a tendency to inherit a genetic susceptibility to getting multiple sclerosis, but it's not a genetic disease or a genetically determined trait like brown eyes or brown hair. Even in identical twins -- and these are people who have exactly the same genes -- if one of the twins has multiple sclerosis, there's only 1 chance in 3 that the other identical twin will ever get multiple sclerosis.
DAVID R. MARKS, MD: Once the diagnosis is made, how do you and your patients arrive at a treatment plan?
FREDERICK MUNSCHAUER, MD: It's very individual. I think the most important thing is to recognize that multiple sclerosis needs to be diagnosed and needs to be treated as early as possible. Those episodes of inflammation that I talked to you about? Well, it turns out that there are about 10 times as many episodes of inflammation that happen in the brain if you do frequent MRI scans as people experience in terms of exacerbations, and we need to cut those spells of inflammation down. Fortunately, drugs that we have available now -- interferons and Copaxone -- are effective in treating the relapses of multiple sclerosis. So the first thing is to make the diagnosis early and to get people on treatment before damage is done. Once damage occurs, you may not be able to recover, and the name of the game is to prevent progression of physical problems or problems with thinking and memory in multiple sclerosis, and we can do that now.
DAVID R. MARKS, MD: There are a number of options, so is there a general philosophy on how to arrive at the treatment that's right for the individual?
FREDERICK MUNSCHAUER, MD: I think it needs to be discussed between the individual and their neurologist. I can tell you at the Baird Multiple Sclerosis Research Center in Buffalo, where I practice, we feel that interferons are the most effective therapy for multiple sclerosis.
DAVID R. MARKS, MD: Jan, how did you arrive at the decision? It must have been a little bit overwhelming when it was first brought to you.
JAN FULLER: It was a frightening idea to imagine that the only treatment I could get was a self-injection. All three of the drugs are self-injected medications. I'm a long-distance runner, and for me the training sessions, running five days a week, is very important, and one of the first considerations for me was to think about how often did I have to take the drug and what were the side effects going to be? So an option of a once-a-week injection with less significant side effects fit better into my lifestyle.
DAVID R. MARKS, MD: How did you learn about the research?
JAN FULLER: My neurologist gave me information on all three of the drugs, and I also contacted my local chapter of the national MS Society, and they gave me additional research.
DAVID R. MARKS, MD: Aside from the marathon running, does any of this sound familiar, this thought process that went into deciding on treatment?
MAUREEN BEILMAN: Absolutely. I was diagnosed 14 years ago, and 14 years ago there were no options, but there are today. The treatment was stress management.
DAVID R. MARKS, MD: It must have been frustrating.
MAUREEN BEILMAN: It was frustrating. It was, "Well, there was nothing I could do." Then as these drugs came out, my neurologist and I discussed them, and at one point he had said, "I really think that you need to consider going on one of these," because I had had a few exacerbations over a two and three year period, so he felt that it was a good idea for me to consider one of those three, and I did the same thing that Jan did, researched. Basically, though, I took my neurologist's suggestion, and he felt that Avonex was the right option for me. I really put my faith into his advice.
DAVID R. MARKS, MD: What role did your family play in the decision-making process?
MAUREEN BEILMAN: I'm single, and my family certainly was concerned, but they really didn't play any part in making that decision. One of the things was also cost, because these are expensive. So looking into my plan, my insurance plan, and what would be covered was very significant in helping me make that decision.
DAVID R. MARKS, MD: You're happy with the decision?
MAUREEN BEILMAN: Yes.
DAVID R. MARKS, MD: Did it have any side effects, the medicine?
MAUREEN BEILMAN: Yes. It did have side effects, and it still does.
DAVID R. MARKS, MD: What are they?
MAUREEN BEILMAN: It's been a year plus since I've been taking it, and I have flu-like symptoms. In the beginning they were pretty powerful, chills and a lot of discomfort. I'd say within maybe a month or so of taking the Avonex they started to decrease. Now I still have some night discomfort, flu-like symptoms, but by the afternoon of the next day when I take the medicine, all of the side effects have gone and dissipated.
DAVID R. MARKS, MD: Jan, very quickly, any side effects for you?
JAN FULLER: Not even as severe as Maureen has described. The morning after I take my shot I feel like I was sick yesterday. My muscles feel tired. My joints feel tired. I take a little acetaminophen and I am good to go for the day.
DAVID R. MARKS, MD: Are you both happy with the decision to go with medicines?
MAUREEN BEILMAN: Yeah.
JAN FULLER: Uh-huh.
DAVID R. MARKS, MD: Good, and there is a lot of hope out there. Thank you both, and Dr. Munschauer, thank you very much for being here. You guys provided some great input.
JAN FULLER: You're welcome.
DAVID R. MARKS, MD: Thank you all for joining our webcast. I'm Dr. David Marks. Goodbye.
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