DAVID R. MARKS, MD: Hi, and welcome to our webcast. I'm Dr. David Marks. Sometimes you can tell a person has MS, other times you can't. Symptoms like weakness, fatigue or numbness aren't outwardly apparent to the objective observer. This is the invisible side of MS, and it means that in many cases, only the patient knows that they're suffering. This can affect her daily life as well as treatment.
Here to discuss invisible MS are two experts. First is a patient, Gina Gunkel. She lives in New York City and she looks great, but she also has MS. Welcome.
GINA GUNKEL: Thank you.
DAVID R. MARKS, MD: Thanks for being here. Next to her is Dr. Rick Munschauer. He's a neurologist at the University of New York at Buffalo. Welcome.
What is this whole invisible MS syndrome? Is it a syndrome?
FREDERICK MUNSCHAUER, MD: I think it certainly is. Multiple sclerosis can affect an individual in so many ways. It can slow down your thinking, it can blur your vision, it can make you feel just a little bit dizzy, lightheaded. It can be a painful disease. You can have numbness and tingling and burning, and yet look beautiful, just like you. I think that when we deal with these symptoms, it's very important to have somebody with MS when they're not feeling well express it, because they need to get the people who live with them and work with them aware that they're not having a very good day. It's also very important that they tell their doctor, because there's very good therapy to treat a lot of these symptoms.
DAVID R. MARKS, MD: It must be very frustrating when you're not walking on crutches, but you're tired and you don't feel very well.
GINA GUNKEL: Right, and especially when you can't see I think it's very difficult, because you try to express to people, "Oh, I have this big blind spot in front of my eye," and they don't really understand. "But you look so well. What's the problem?" "Oh, I can't walk around the mall a few times. I'm too tired." "But you look so well." It really is a problem. I don't know what's easier, to have the outward --
DAVID R. MARKS, MD: Is this a chronic condition? I mean, do you feel tired all the time?
GINA GUNKEL: No, no. It varies. It varies from time to time, but the thing is that usually there's always something that's going on that's brewing, and nobody can tell. It's not even that no one can tell, it's just you have to constantly remind your family and friends, "That might be pushing it over the line. I really need to take it easy." "Why?"
DAVID R. MARKS, MD: Do you find a lot of lack of understanding?
GINA GUNKEL: I think that's because you don't have a symbol that you're using or that people can visually see. I think it's more difficult that you just have to be more repetitive about -- you have to be a little bit selfish for yourself and say, "I need to take it easy."
DAVID R. MARKS, MD: Is there some kind of education that the doctor can do in some of the doctor's visits with the family members?
FREDERICK MUNSCHAUER, MD: I think so. I think physicians can take a greater responsibility in trying to teach people how to deal with MS. For instance, when people are having symptoms with MS, they may be more irritable. They may have a shorter fuse. They may be able to not control their emotions as well as they can, and it's very important for somebody with MS to just turn to somebody and say, "Look, my leg is burning now, so I don't feel quite well, and just give me a little bit wider berth." The bladder problems, also. I mean, you can be in the middle of a conversation and just have to go to the bathroom, and you can be so embarrassed that you have to go and yet know that if you don't go immediately then you're going to be in an even greater social problem. Just saying to someone, "Excuse me, but I have MS and I need to find a bathroom," I think that can help a long way.
DAVID R. MARKS, MD: How does a person know if their medications are working or not? If they look outwardly good, they may think that their medications are actually doing a good job, but they still may not be feeling great inside.
FREDERICK MUNSCHAUER, MD: That's very true. For instance, let's take fatigue, which is a very difficult symptom to deal with on a daily basis. There are medications that can help. The medications, unfortunately, do not completely remove the symptom, but we hope to get control of it. Burning, painful tingling that can be characteristic of MS. There are medicines that help. Some of these medicines have their own side effects that can make you miserable, too, but I think it's important for you to get an idea of how the symptoms are affecting you, and then to address it with your physician so that the physician can prescribe the appropriate medications that can allow you to lead a happier, more fulfilled life with less of the invisible symptoms that erode our sense of well-being and happiness.
DAVID R. MARKS, MD: Of course, one aspect that people don't think about is that if the symptoms are invisible, the doctor's not necessarily going to pick it up in an exam, so you have to communicate with the doctor. I would imagine that's really a key thing with your appointments.
GINA GUNKEL: Absolutely. The other interesting part about invisible MS, especially with people that are newly diagnosed, is that psychologically a lot of people stay in denial longer because they don't have to confront it with other people. They don't have to confront it, trying to get out of the car, going inside the mall, because people don't know. I think psychologically, people with invisible MS take a lot longer time to come to terms with their illness and their diagnosis.
DAVID R. MARKS, MD: What's the harm in that?
FREDERICK MUNSCHAUER, MD: There are good therapies for MS. There are good treatments for MS. You need to be on drugs that decrease the inflammation, because over long periods of time, people will do better and have less impairments. There's no reason to suffer in silence with MS, because we have therapies that can address the symptoms that make life with MS more miserable. People can, with MS, lead tremendously productive, vibrant lives. Look at you. That's what we're trying to work at. But to do that, you have to acknowledge your symptoms, acknowledge your limitations and work with your family and your healthcare providers to get a handle on it. That's the key.
DAVID R. MARKS, MD: Any last words to other sufferers?
GINA GUNKEL: So many people with invisible MS feel, "Maybe the doctor made a mistake. Maybe I really don't have MS," especially if they're intermittent symptoms, and it's really, really important to get on therapy right away because it'll just have such long-term effects that it'll be beneficial. But you have to be able to say "I have MS" in order to do that.
DAVID R. MARKS, MD: Even if you're functioning pretty well and no one else can see it?
GINA GUNKEL: Right. Exactly.
DAVID R. MARKS, MD: Thank you both for joining us.
GINA GUNKEL: Thank you.
DAVID R. MARKS, MD: You definitely have invisible MS, because you look great. Thank you for joining our webcast. I'm Dr. David Marks. Goodbye.