Hair loss Treatment Center

PARTICIPANTS Frederick Munschauer III, MD State University of New York at Buffalo School of Medicine Maureen Ann Beilman, MEd MS Patient Jan Fuller MS Patient

Let me introduce the panel. To start, we have Jan Fuller, an MS patient from Wooban, Mass., as they say in Boston. Thank you.

JAN FULLER: That's how they say it.

DAVID R. MARKS, MD: Next to her is Maureen Beilman from Emmaus, Pennsylvania, who is both a patient and she counsels patients with MS. Thanks for being here.

MAUREEN BEILMAN: You're welcome.

DAVID R. MARKS, MD: Our resident expert is Rick Munschauer. He's a physician and associate professor of neurology at the State University of New York at Buffalo. Thanks for being here.

FREDERICK MUNSCHAUER, MD: It's a pleasure, David.

DAVID R. MARKS, MD: It must have been very difficult being diagnosed with MS, when you first heard the words "multiple sclerosis" come out of the doctor's mouth.

JAN FULLER: Oh, my gosh. All I could picture was the old -- what they called the public service announcement that was an empty wheelchair against a black backdrop, and it said, "Multiple sclerosis, the crippler of young adults." I was 40 and running marathons and chasing two kids around and thinking, "There's just no room in my life for a wheelchair, so there has to be something else, some other place to go."

DAVID R. MARKS, MD: You thought you were doomed to the wheelchair?

JAN FULLER: Initially, yes, until I did more reading and more research and met some other people with MS, and realized that there is lots more hope.

DAVID R. MARKS, MD: Maureen, how about you? You were diagnosed a little bit earlier, even.

MAUREEN BEILMAN: Yes, I was 30 years old. To be honest, I had not known anybody with MS, and I really didn't know that much about the disease, so it kind of was, "I don't know what I'm in for. I'm not sure what this is all about." It sounded bad, but I really did not have an image in my mind of what that meant for my future.

DAVID R. MARKS, MD: How were you diagnosed with it in the first place?

MAUREEN BEILMAN: I had optic neuritis. Actually, that was the first symptom.

DAVID R. MARKS, MD: What is that?

MAUREEN BEILMAN: Symptomatically what had happened was I started to have some blurred vision and eye pain. I was treated with a problem with my eyes as opposed to a neurological problem, and then a few months later my left side had become numb. It was the combination of those two symptoms that then I was diagnosed.

DAVID R. MARKS, MD: What about your symptoms, Jan?

JAN FULLER: My symptoms initially were sensory loss to the point where I could not feel the chair I was sitting on, and one day the chair actually rolled out from under me, and I was not aware that it was rolling until I heard the casters, and then realized that I was losing my chair out from under me.

DAVID R. MARKS, MD: That's pretty dramatic.

JAN FULLER: Very.

DAVID R. MARKS, MD: When you were diagnosed initially, what impact did it have on your family? Why don't you start, Maureen?

MAUREEN BEILMAN: They were devastated. My mother was very upset and frightened for me, and everybody was just terribly concerned and really didn't know what this meant specifically. They just knew that somebody that they loved was diagnosed with this disease, so they were very upset.

DAVID R. MARKS, MD: Jan, your family must have also seen the public service announcements. Did that same image come into their minds of the wheelchair?

MAUREEN BEILMAN: The same image did come into their minds, and I think that they had all of the fears for me and for my future, and at the same time, for every one of them, there was a little piece of personal loss as well, that my husband could look out 20 or 30 years and wonder what his life was going to be like with a handicapped spouse. My parents grieved for dreams that they thought might not happen for their child. My children, at the age that they were, really didn't have a lot of awareness other than the fact that Mom was traveling in and out of Boston and seeing lots of doctors, but they didn't have a long-term sense of what the illness was.

DAVID R. MARKS, MD: Rick, does this have something to do with the way the physician presents the diagnosis to the patient?

FREDERICK MUNSCHAUER, MD: I think it has more to do, David, with what our previous thoughts were about multiple sclerosis. Up until 1994, there were no treatments for multiple sclerosis that could change the course of the illness. But we're living in a new age now, an age where early, aggressive treatment can change that image of ending up in a wheelchair with no place to go. I think that's really the most exciting part about multiple sclerosis. In any one individual you can't predict prognosis in MS, but I can say that over 10 to 15 years, the majority of people with MS will have some problem walking around, and up to half may think that their thinking is just a little bit slower. That's the untreated state. We're doing better than that. With interferons alone, we're 40% of the way to a cure. That's very exciting, to see that our previous conception of what this illness is all about can change, and it can change because we have good therapies.

DAVID R. MARKS, MD: Speaking of doing better, of course, you thought about wheelchairs, and yet you're putting us all to shame by running the Boston Marathon. What part did your MS play in your training? How did it alter your training for the marathon?

JAN FULLER: I run in the very early morning. I'm very careful now because heat quite often exacerbates fatigue and mild kinds of symptoms, although the fatigue itself can be rather debilitating. I do all of my training very early in the morning. Five o'clock in the morning is when I'm out running most of the time. I'm aware that for the most part my times are getting slower.

DAVID R. MARKS, MD: Give me your last time.

JAN FULLER: Well, last year it was 4:04.

DAVID R. MARKS, MD: That's not very slow.

JAN FULLER: They're very respectable. They are very respectable times, but they are getting slower. My race times are all getting slower at this point over the past two years when I've been having some other symptoms.

DAVID R. MARKS, MD: But you're still going.

JAN FULLER: Absolutely. Absolutely. It's a speed bump. It's not a stop sign, it's speed time. It was a car ad this summer, and it just struck me so vividly that MS is just a speed bump. It's going to affect the way I do things, but it's not going to stop me from doing things.

DAVID R. MARKS, MD: I wish that I could have such a speed bump and run the marathon, let me tell you, being as out of shape as I am. Now, Maureen, you counsel patients. What do you tell them? How do you keep the optimism up?

MAUREEN BEILMAN: One thing that's always helpful is that they see me, first of all, and know that I've had this for 14 years and that I'm not in a wheelchair, that I'm still active and I still vacation and I still do the things that I want to do. But I definitely talk with them about wellness and balancing their life and keeping as much as a positive attitude as one can -- acceptance, tolerance, compassion with oneself and learning to go at paces that are comfortable and really being aware of who you are and what you need, and just adapting all of those things to daily living.

DAVID R. MARKS, MD: How do people respond to that?

MAUREEN BEILMAN: Very well. I have so many different kinds of patients that have been referred to me newly diagnosed, and they're very afraid. They're comforted by that information. They feel that it gives them something specifically to work on and work toward.

DAVID R. MARKS, MD: Of course, you're a living example to them, which helps.

MAUREEN BEILMAN: Right, right.

DAVID R. MARKS, MD: Rick, what do you tell patients, especially about lifestyle modifications and the way it's going to affect their life?

FREDERICK MUNSCHAUER, MD: I certainly am just thrilled to hear that Jan and Maureen are just examples of how they rule the disease; they don't let the disease rule them. That fundamental attitude towards a chronic illness, I think, is very important. You can let this become an overwhelming part of your life, and neither one of you have done that, and that's terrific.

But I think that you need to be little wiser. You need to work a little smarter with MS. It's a shame if people get into the habit of saying, "I can't do something," because it becomes a self-fulfilling prophecy. With MS you should be more challenged to do more each day rather than less each day. You can live wonderful productive lives with multiple sclerosis. Maureen, it was great what you said, that in some ways having a chronic illness like MS where the future is a little insecure, there can be a silver lining to that cloud, because it allows you to evaluate what's really important to you in terms of your personal life, your professional life, in terms of continuing on running and what your children mean to you and what your spouse means to you. In a way, you can use the -- you're a victim when you have MS, but you can use the life experience of that to assemble an even more meaningful life.

DAVID R. MARKS, MD: Any advice to other people out there who are watching this webcast who are maybe newly diagnosed with MS?

MAUREEN BEILMAN: I think first and foremost, it's really important to educate yourself, to get the information -- as much information as possible -- and that comes from many different sources -- the national MS Society, your physician, programs like this -- so that you can make decisions and choices based on having a lot of information. Secondly, being that I'm in the mental health field, to be good to oneself, to really be a student of oneself and to develop a lifestyle that complements your needs.

DAVID R. MARKS, MD: Jan?

JAN FULLER: I think in addition to what Maureen has said, it's really important to understand the value of the medications that are out there and to discuss those treatment options with your neurologist early in the disease. The treatment options that exist are not options for "when I get really sick" or "when I need the wheelchair." Those are options for people living right now with the disease, and they should be explored early on in the course of the disease, and re-explored frequently with your doctor.

DAVID R. MARKS, MD: You two are shining examples of that. Thank you for being here. Thank you,

Dr. Munschauer. And thank you for joining our webcast. I'm Dr. David Marks. Goodbye.