More MS news articles for Jan 2002

What's Happening to Me?: Invisible MS

January 24, 2002
Frederick Munschauer, MD, State University of New York, Buffalo Gina Gunkel, MS patient
There are approximately 350,000 people in the United States today living with multiple sclerosis, an incurable condition that attacks the nervous system. Common symptoms of MS, like weakness, cognitive impairment, fatigue or numbness, are not always apparent to the objective observer, which at times may feel like a blessing, other times a curse. Living with "invisible" symptoms can be isolating and lonely, and can even confuse treatment decisions.

Patient Gina Gunkel and neurologist Dr. Rick Munschauer talk about the difficulties of treating and living with the symptoms of MS that can't be seen.

First, what is this whole invisible MS syndrome? Is it a syndrome?

DR. FREDERICK MUNSCHAUER: 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.

Gina, is it hard to make people understand when you're not feeling well?

GINA GUNKEL: Yes, especially when they can't see why you feel bad, I think it's very difficult. 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?" they say. "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.

Is this a chronic condition? I mean, do you feel tired all the time?

GINA GUNKEL: No, no. It varies. 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," and they say, "Why?"

Is there some kind of education that the doctor can do in some of the doctor's visits with the family members?

DR. FREDERICK MUNSCHAUER: 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, they may be more irritable. They may have a shorter fuse. They may not be able to control their emotions as well as they usually do, 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 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.

How does a person know if their medications are working or not? If they look good, they may think that their medications are actually doing a good job, but they still may not be feeling great inside.

DR. FREDERICK MUNSCHAUER: 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 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 them 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 a sense of well-being and happiness.

If the symptoms are invisible, the doctor's not necessarily going to pick them up in an exam, so you have to communicate with the doctor. Is that really important?

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. I think people with invisible MS take a lot longer time to come to terms with their illness and their diagnosis.

What's the harm in that?

DR. FREDERICK MUNSCHAUER: There are good treatments for MS. You need to be on drugs that decrease the inflammation, because over long periods of time, you will do better and have fewer impairments. There's no reason to suffer in silence with MS, and therapies can address the symptoms to make them more bearable. People can, with MS, lead tremendously productive, vibrant lives. 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.

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 will have long-term effects that will be beneficial. But in order to take that step, you have to be able to say "I have MS".

Copyright 2002 Healthology, Inc