Invisible Symptoms in MS Part 1 - National MS Society

hello I'm Kate Milliken and welcome to ms online no two people have exactly the same MS symptoms and each person's symptoms can change or fluctuate over time many of these symptoms are referred to as invisible symptoms in other words no matter the challenge they pose to a person with MS those around them are unable to see what they are coping with in this first of a two-part interview we'll explore what these invisible symptoms are and what we can do to manage them we'll be talking to dr. Rosalind Culp who is vice president of the National MS society's professional resource center welcome to MS learn online dr. Cobb quiet okay thank you so first and foremost how would you define an invisible symptom and what are they well I think the easiest way to think of an invisible symptom is something that if you walked in a room experiencing that symptom the people in the room wouldn't know about it so you might be extremely uncomfortable with pain or fatigue or foggy thinking that's just not going the way you want it to do and and nobody would know how much difficulty you were having and there are a lot of symptoms in ms that are invisible to others so can you give a range of what one might define as an invisible symptom sure so if you think about it invisible symptom means any symptom that's not visibly obvious to other people so if you start at the top of the head and work down cognitive changes are a very common symptom of MS that can certainly impact a person's quality of life and other people around you may have no idea that you're struggling with memory or concentration or decision-making you could experience significant changes in your vision but your eyes to anybody around you look just as beautiful and normal as they did before and yet you're struggling to see the world in a steady clear way it's very fatiguing very has a huge impact on activities every day pain is a very very common symptom and ass it wasn't that many years ago that people with MS we're told that MS didn't cause pain but we know it it can cause a variety of strange sensory changes numbness tingling burning sensations and severe severe pain that affects the whole course of the day and the ability to sleep at night without some education people wouldn't even know that you were experiencing that bladder and bowel changes very common in ms and unless somebody sees you dashing off to the bathroom in the middle of an important conversation they might never know that you're struggling to maintain control over bladder or bowels all of these things take a huge amount of energy which adds to yet another invisible symptom which is the fatigue that's so common in ms so we know that there is a unique kind of fatigue caused by ms itself by the damage to the nerve and nerves in the central nervous system but if you think about all of all of the energy it takes to cope with pain for example which can be so debilitating distracting and depressing that that's just adding on to the invisible symptom of fatigue and I think we also need to mention mood changes in all of this because we know that mood changes including depression are very very common in ms both as a reaction to all these other things we're talking about because ms can be depressing but also as a symptom of the disease itself and certainly that's not necessarily visible to friends family and people in the workplace so you know from the top of the body down people are experiencing things that others can't see what I'm curious about is you know the fact that they're invisible does that make them harder to treat I mean how are these invisible symptoms managed well I think that it's important to recognize that ms physicians know the range of symptoms that can appear so if one is seeing a physician who is very familiar with MS that doctor is likely to ask about a whole range of symptoms but a health care professional who is less familiar with MS can't read a patient's mind may not ask about all those things so it means the people who are living with MS and have a lot of invisible symptoms need to make sure that they are alerting their health care professionals about all the symptoms they're having one of the big challenges is that people with MS don't necessarily know that a symptom that they're having is related to their MS so if they have extreme fatigue but they don't know that that's a symptom of MS or they're experiencing bladder or bowel changes and it's never occurred to them that that may be related to their MS or even pain they don't bring it up physician might not ask it doesn't get treated so the very very first step for people living with MS is to be educated about the kinds of symptoms that can cause and then make sure that they communicate that to the doctor or the nurse during their regular visits then the doctor and the nurse can begin to offer various kinds of management strategies and part of your question is how do we manage them well I think there's a whole range part of it is could be a medication to treat a symptom there may also be rehabilitation strategies that have nothing to do with taking a medicine but may have to do with exercise or using a different kind of adaptive aid to help you with something or it may be just learning how to manage your environment and your body and take good care of yourself so that the symptom is handled so it's sort of teamwork between person with MS and the healthcare team to make sure they're using all the possible strategies to manage each symptom so one of the things that you hear about ms which is true is that it's always a very individual disease the other thing you hear when you talk to people with MS is I say you know it's so frustrating for me because I come in and I tell someone that I have MS and they say oh really like you look so great this seems across the board is something that the Emmit people with MS actually resent in some ways from your experience can you articulate about that I think it's actually a major challenge for people particularly early in the disease you know we all like to get compliments somebody says gee you look great well we like to hear that but I think sometimes when it's a family member or a colleague or even your boss is saying that it can be a little bit of a two-edged sword it can be paying you a compliment or it can be also saying well I don't get it if you look so good how come you're not doing what I need you to do how come you're not keeping the house clean or getting heels on the table or getting your work assignments in on time so it's requires a real educational process so that the people in who are important in your life understand that what they're seeing isn't necessarily the full picture of what's going on inside you and if you don't tell them they're not going to know nobody can read your mind so you kind of have to put on your teaching hat and be prepared to educate all those important people in your life about what what's going on might affect how you feel on a given day how you behave or how you perform on a given day I think when most people think about seeing someone who's worsening you know you see somebody who's limp is getting worse and you think they're progressing or youth it you see someone who goes blind in one eye and you think wow that's really bad invisible symptoms like fatigue in some ways to a layman may not seem like it's as bad from your perspective being in the MS community is it something that is taken as seriously as something that's a little bit more dramatic to see well I think we are always more impacted by the things that we can see because the things we see we can kind of relate to and figure out try to figure out how that would feel if that was happening to us so yes I think the visible symptoms always have more impact which is why that education piece is so important but in terms of how symptoms affect people there's tremendous variation from one individual to another so for somebody who has really debilitating t-they will say that is the most challenging part of their ms they cannot get through the day and do the things that are important to them because they are so exhausted for somebody whose whole lifestyle depends on their physical activity level somebody who is a ballet dancer or a lead or repairs of the roof or the TV the TV cables physical impairments are devastating because they change their whole lifestyle for somebody for whom their ability to think and reason and problem-solve is the core of the work they do teacher a lawyer the accountant then that invisible cognitive change that is can be so common in ms is the most devastating symptom so I think the best way to think about it is the interaction of a person's particular symptoms with their lifestyle and they will be the best judge of which of their symptoms has the biggest impact on their quality of life and their ability to do the things that are important to them with all of these symptoms that we're talking about in the range of FMS how do you know that all of the symptoms actually are MS I mean couldn't it be possible that one of the symptoms actually is an MS and there's something else that's wrong with you I'm really glad that you asked that Kate because I think it is important for for people with MS to recognize that MS can cause a lot of different symptoms so they need to know what those can be but not to fall into the trap of assuming that everything that they experience or everything that happens to their bodies is caused by MS so once again it's important to make sure that you mention any new or changing symptom to your healthcare team because they can help you sort out is this truly an MS symptom or is there something else going on that we need to figure out fatigue is a great example of this because we know that MS fatigue is a very common invisible symptom but before the doctor will diagnose ms fatigue he or she is going to look at lots of different things that can contribute to a person's fatigue interrupted sleep from sleep apnea for example is it is very important to identify sleep apnea is not caused by MS and it's something that needs to be carefully treated because it has other risks to it but it could get lost if the person living with MS assumes well I'm just tired because I have MS so doctor takes a very careful history of a new symptom really tries to make sure that it's an MS symptom and that it's not something that your general doctor really needs to be taken care of because it's a whole other health condition I actually have had live this example of thinking that maybe I was going into a sensory relapse because I was having such terrible tingling in my hands and it was going in my wrists and the doctor said you know Abed I think he didn't say you know up here but he said you know what I think you've got carpal tunnel syndrome and he was totally right he did two tests and it was very clear and that for me is somebody with MS it was a huge relief right you know it actually putting in that boundary find out there was something else wrong was it was a better solution you know in that instance fix it yeah so we can't assume that everything is a direct result of MS and it's only by really talking symptoms over with the doctor or nurse that we can weed out those things that are a mess from those that aren't right thank you dr. Cobb for giving us a little bit more insight into the world of invisible symptoms in our next conversation we'll continue to learn coping techniques for these types of symptoms we'll see you then this is Kate Milliken for MS learn online you

Channel: NationalMSSociety

Views: 544,128

Rating: 4.8549285 out of 5

Keywords: MS, multiple, sclerosis, National MS Society, MS Learn Online, health, neurologic, autoimmune, nerve, disease, Society, learn, Symptom Management, invisible, symptoms

Id: vqUN77VdI-s

Length: 13min 11sec (791 seconds)

Published: Thu Sep 09 2010