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Hello.

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Hello. Thank you so much for tuning in today. Today we are going to be talking about how you can determine if your exercise routine that you're doing or it doesn't even need to be exercise actually it could be nutrition, if that's what you're focusing on, or hydration or acupuncture, massage, whatever it might be. If you are currently doing something to ideally improve your Ms. Symptoms, how can you know if it's working or not? And there are actual research based, tested ways for you to track outside of just how are you feeling and how you're feeling is super, super important and should definitely be a component of your assessment of if something's working or not. But today we're going to be talking about what those research based tests are that have been proven in clinical research to actually show a meaningful difference of if something is helping or not.

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The big question is how does someone with Ms. Actually improve their mobility, strength, energy independence? The list goes on. My name is Dr. Gretchen Holley, physical therapist and multiple sclerosis specialist. Welcome to the Missing Link podcast. Tune in as I share the top strategies and exercises to help you gain.

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Control over your life with Ms.

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Using research driven insights and advice from top industry experts. Whether you're newly diagnosed or have had Ms. For a over 30 years, whether you have relapsing Ms. Or progressive MS, this podcast is for you. You're sure to feel empowered and inspired after each episode.

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Ready?

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Let's dive in.

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The reason that I feel really called to share this with you today is because not long ago I was working with a one on one patient who has multiple sclerosis and she actually texted me saying that she's been feeling so much better and stronger and like she's walking better and she's tripping less. And all these great things from our work together inside the Missing Link as well as in our one on one sessions and she's been telling me this type of feedback honestly for six, nine months, quite a while. And she had a doctor's appointment with her neurologist and one thing that her neurologist did was manual muscle testing where you test your muscle strength. And this neurologist after testing her told her that she's actually reporting to be weaker than six months ago when she came. And two things about this, the first thing is that manual muscle testing is extremely subjective, meaning it's just based on how that neurologist or physical therapist or whoever is doing it, how strong they feel you are on that day. There's no number that is given like, there's no test that, like, for hand strength, you can squeeze a device and a specific number will pop up showing you your hand strength. It's nothing like that. You press on the patient. I'm sure you are aware of this test, as you've probably had it before. But you press on a specific muscle group, and the goal is that the patient needs to resist you. And depending on how much you can resist, they give you a number anywhere from one, if there's extremely little strength, to five, which is full strength. So it also could just depend on the day, regardless of who's doing it again, a neurologist, physically, physical therapist, whoever. So that's one part of the equation. But the other part is, once the neurologist told my patient this, she was so bummed and discouraged and was feeling like, oh, my gosh, my exercises aren't working. I'm not getting stronger. Felt very defeated, almost like she wanted to stop exercising altogether. And I just replied with one question of, okay, but how do you feel? Do you feel stronger? Do you feel like you're walking better? And she was like, yes, I do. I was just telling you yesterday how much stronger I'm feeling. I'm tripping less, I'm doing better. So I don't know why this test appeared the way that it did. And our approach was, let's just focus on how you're feeling. Because if you're feeling stronger and you are actually walking better, does it really matter that this one specific test on this specific day showed that you scored a lower score than last time? In my opinion, as a physical therapist, not really. And that could actually have very negative side effects and causing her to go into this downward spiral of possibly not even exercising at all anymore, in which case she would definitely get weaker. And so in spirit of that conversation, I wanted to talk about tests that you can do at home or in the physical therapy clinic or your neurologist's office that can actually give you an indication of how you are doing. And if something that you're doing to manage your symptoms is making a difference or not, but they're based on how you feel feel. And when we're talking about measuring progress with ms, there's two different types of tests. There's one type, which is a subjective test. These are called subjective functional outcome measures. And then there's another type which is called objective or objective functional outcome measures. The way that I like to differentiate the two is that subjective is like a survey. It's a questionnaire. It's purely based on how you feel feel. Whereas objective is measured by a number. So you're timing yourself or you're counting number of repetitions. So in this episode, we're going to be talking about subjective. Those surveys, those questionnaires, how you feel about your symptoms at this time. And then in the next episode, we're going to dive more into the objective tests. And as I mentioned, you can do these in the physical therapy clinic or with your neurologist, but you can do them also at home, which can be really helpful because you might only see your neurologist once a year, twice a year as needed. So if they're the only ones doing these tests, how are you supposed to track at home? Or you might be going to physical therapy, but if your insurance cuts you off and you can't go for several months, how are you supposed to know if you're still making progress at home if your physical therapist isn't there to test you? So there's some modifications to doing them at home. But let's dive into what those subjective outcome measures are. There are two gold standard questionnaires, or surveys, whatever we want to call them, for subjective outcome measures. And these help you track what matters to you. And they often catch subtle changes that the objective or measurable tests miss. They can also just validate your experience of how you're feeling, and they can help guide treatment priorities, whether it's a physical therapist treating you or a neurologist or even just something you're doing on your own at home. And the reason that I like to do both subjective and objective outcome measures is because the objective outcome measures are great, because they give us a number which is very easy to see. Okay, is this better or worse than last time? But those tests often can't measure your confidence. They can't measure your daily function ease, they can't really measure your fatigue impact on your daily life. They can't measure your quality of life. They're just measuring how quickly you do something or how many repetitions you can fit in. So that's really where these subjective tests fail fit in. And these aren't. I know, I keep saying that these tests are based on how you feel. They're not just how do you feel tests. They. These are actual validated instruments used in Ms. Research to show clinical differences of if some measure that you're doing, exercise, nutrition, whatever is working or not working. So the first of two subjective outcome measures that have been tested and the gold standard for Ms. Is the modified fatigue impact scale, also called MFIs. So this measures fatigue and how it impacts your life in three different areas of life. Number one is physical functioning. So these are things like how you move, is your fatigue impacting your walking? Is it impacting getting out of bed, your energy levels, things like that. It also will measure the impact of cognitive functioning so that mental fatigue and it can also measure psychosocial functioning. So are you isolating yourself more because of your fatigue? There are 21 questions in total, and each one asks about fatigue impact in the last 44 weeks. So typically, the most frequent that you would take this quiz or survey questionnaire would be four weeks, because it's asking you, in the last four weeks how much has your fatigue. Insert the question and you rate each of the 21 questions from zero to four. Zero is no problem at all, or this never impacts me. One is small problem or this rarely affects me. Two is moderate problem or it sometimes affects you. Three is a large problem or it often affects you. And four is an extreme problem or it almost always affects you. And this specific test really matters because fatigue is one of the most common and can be the most debilitating symptom of, of multiple sclerosis. And as we all know, hopefully by now, Ms. Fatigue is absolutely not the same thing as regular fatigue or regular tiredness. And tracking how your fatigue is impacting your life can help you see if these interventions that you're trying are working. So it's not the same as rate your fatigue today on a scale of 0 to 10. Again, it's these specific questions. So here's just a few examples of questions that you would see on that list of 21 questions. In the last four weeks, I have been less alert, and you would grade that. 0, 1, 2, 3, or 4. In the last four weeks, I have had difficulty making decisions. In the last four weeks, I have been less motivated to do anything requiring physical effort. In the last four weeks, I have had trouble finishing tasks that require thinking. So those are just a few examples. And the test is great in that it tells you which questions are the physical questions versus cognitive questions versus psychosocial questions. And from there you can have a total score of all of those. Or, or you can actually add up. Okay, what was your physical fatigue score? What was your cognitive fatigue score? What was your psychosocial fatigue score? Because you might be surprised to see that cognitive and psychosocial are great. Those scores are very low, but physical is very high, or maybe all of them are high or low. You know, there's so many different variations that it can be But I really like this level of scoring because it gives you such specific information. And what the scores mean is there's. There's no specific cutoff for good or bad. Whereas with the objective outcome measures, there's often a number that says, you know, if you fall above or below this number, you are at a. You're a high fall risk or you're a low fall risk. And so it's very much based on that number. Whereas with this test, there's no good versus bad. What matters is your change over time. So again, you'd be tracking this every four weeks at earliest, or up to eight weeks. And the goal is to see decreasing scores as you implement fatigue management strategies. One beautiful thing about this test, as well as the next one that we're about to go into, is that it's the same test because it's a questionnaire. It's literally the same exact test at home as it is when you take it in the physical therapy clinic or your neurologist's office. So that means that we can compare them equivalently. It's not like you're more likely to do better when tested in the physical therapy office or when tested at home. So that's a nice perk about these. You. You can print this out. If you just search online for modified fatigue impact scale, you will find this if you have the Missing link app, which, by the way, we've had an app called the Missing Link app for many, many years. But just within this last year, in 2025, we actually switched platforms. So if you have the app but you haven't logged in within the last several months, I would delete that app and download the new version. And once you have that new version, there is a free, we'll call it a course called track your progress. If you click on that, it will give you this modified fatigue impact scale in a way that you can actually take that quiz virtually right in the app. There's no special equipment needed. I would recommend taking it around the same time of day, just for consistency, but as we all know with ms, every day is different. And so if possible, I would recommend taking it on the same type of day. So if on the first day that you took it, you were feeling very fatigued and it was not a great day for you, obviously that's going to yield different numbers for you than if the next time you take it on a day that you're feeling great. So you might want to consistently take it on a day where it's not your best day or vice Versa purposely take it on a day where it is your best day or an average day. We're just trying to find as much consistency as possible so that the numbers are more directly correlated. The next test for subjective outcome measures is the Multiple Sclerosis Walking Scale 12, or the MSWS 12. And this measures how Ms. Affects your walking ability. It also looks at the impact of walking in various situations, like stairs and outdoors versus indoors. And it can also look at walking limitations, specifically over the last two weeks. So as you might already be guessing, this specific test is super important for Ms. It's one of the gold standards. And one reason for that is because walking is is often the number one concern of people with Ms. It's one of the number one ways that symptoms will limit you physically. So this test captures the nuances that those objective tests might miss, like quality, confidence and endurance. So with this Test, there are 12 questions each asking you about your walking ability in the last two weeks. So with the fatigue test, it was asking within the last four weeks. This is only two weeks. The rating system is 1 through 5. So, for example, the questions are lined up in a way where it says, in the last two weeks, how much has your Ms. Limited your ability to blank, to walk, to run, et cetera. And then you grade those one through five. So a one means not at all limited or affected, you're totally fine. A score of two means you're a little limited or affected. Number three is moderately limited or affected. Number four is extremely limited or affected. And number five is completely limited, you're unable to do it. So for any of the 12 questions, if you ever feel like I just can't do that, like I can't even score this because I haven't done that in many, many years, and that's not even a goal of mine, that would get a grade of 5. So some sample questions that you would see on this list is, in the last two weeks, how much has your Ms. Ltd. Your ability to walk? In the last two weeks, how much has your Ms. Ltd. Your ability to run? In the last two weeks, how Much has your Ms. Ltd. Your Ability to climb up and down stairs? In the last two weeks, how much has your Ms. Limited your ability to stand when doing tasks? And in the last two weeks, how much has your Ms. Limited your balance when standing or walking? Now, when we're talking about scoring, this one's pretty simple. You're just going to add up all of the items. So the score can range anywhere from 12. If you graded a 1 for each of those answers, or it could be as high as 60 if each answer got the score of 5. And as we might be able to guess, the higher the score, the greater the walking is impacted from Ms. And again with this one, there's no right or wrong, there's no good or bad. It's just about your changes that you see with this questionnaire over time that matters. So I know this is easier said than done, but try your best to not have any emotional tie to what the number says. It's just a number. And the goal is that from here on out, you consistently focus on the interventions that you're hoping will be helping your walking. And then you take this again in four weeks, six weeks, eight weeks, whatever you choose. And ideally, that score might be a little bit lower. I really like this test as a physical therapist, because again, the objective tests look at numbers. And when we're looking at numbers, the goal is often do more repetitions or walk faster or do this faster. But oftentimes when you're doing more or going faster, your quality is less than what it was initially. And if your quality is less, that actually means you might be even more likely to, to trip and fall or put yourself in a situation where you lose your balance. And the whole point of walking and moving is to keep walking and moving and not fall, not injure yourself. Which means that the goal might not necessarily be to walk faster or to do more repetitions. So these changes that we see with this questionnaire are, they're clinically meaningful. Again, it's one of the gold standards. And research shows specifically that a four point change is clinically meaningful. So if you scored, let's just say 60 initially and then next time, or maybe even 12 weeks from now, or 16 weeks from now, instead of scoring a 60, you now are scoring a 50, 52, 54, 56. Even that four point change of between 56 and 60 is clinically meaningful, meaning that does actually prove that what you're doing is helping. However, any positive trend is worth celebrating, even if it's just one point. Typically, I recommend that my Missing link members and my clients that I'm working with track this also about every four to eight weeks, just like the Fatigue scale scale. Just because it asks in the last two weeks doesn't mean you have to take it every two weeks, Especially as we're working with something like walking, which requires a lot. It requires balance and strength and flexibility. It's unlikely that you would see significant differences in two weeks. So tracking every four to eight weeks would Capture more of your efforts. Similar to the modified Fatigue Impact Scale. One beautiful thing about this is that it, it's the same test whether you do it at home or in your neurologist office or physical therapist clinic. So that's wonderful. You're not any more or less likely to score yourself differently in one of those settings, which is awesome. The best thing that we can do is replicate the situation as best as possible, which is much harder to do with the objective test. But with the subjective test it just goes based on how you feel. So it's equivalent regardless of where you are taking that quiz. Also similar to the modified Fatigue Impact Scale, just for best practices, try to take it around the same time of day every time that you take this quiz or assessment. Again, if you take it in the morning the first time, you might score yourself differently than if you take it in the night time the next time. Not necessarily because your strength or walking has changed that much, but just because of the time of day or if you took it on a really bad day the first time and you're taking it on a great day the next time. Again, we're, we are trying our best to take it on similar days, similar times, so that we're comparing apples to apples. A few more notes just on both of these, the Modified Fatigue Impact scale and the MSWS 12. First of all, you can take both inside the Missing Link app, including the multiple sclerosis walking scale 12. However, one thing I really want to share is to not obsess over single scores, which I know it's easier said than done, especially if you're type A and numbers are really exciting for you. I know, I feel that way. But instead of focusing on specific scores, look for trends over three to six months. Because Ms. Is so variable, it could be very likely that you show improvements between test number one and test number two. But then you go down in test number three and then up in test number four, up in test number five, down in test number six. You know it's going to waver, it's going to go up and down just because that's what Ms. Does. But if we look at trends over six months, what you might notice is that even though you're still going up and down, you're still scoring better than lower. What you might notice is that at the six month mark, your lowest might still be better than what your lowest was six months ago. And that is what we're really looking for. So we're not necessarily looking for either of these tests for just gradual improvement. And every time is better and better. Would that be amazing? Absolutely. But is that realistic and expected? Absolutely not. One bad score doesn't negate progress. So similar to my patient I was explaining in the beginning of this episode, she technically scored worse on her manual muscle testing, but that didn't negate her progress. She was still was actually walking better and feeling stronger. So it's just a number on these tests. When you're adding them up, it's a bad score or a low score, a high score, whatever it is, doesn't negate the progress that you feel that you actually are making. Just keep going, trust the process. We're using this as an assessment tool, and it's normal for these to fluctuate because Ms. Fluctuates. And at the end of the day, we want to be using these numbers to guide our decision. So if your fatigue scores are increasing, let's maybe review your energy conservation strategies. Or if walking scores are increasing, let's maybe over time, like over six months, let's maybe reassess your exercise routine or consider if you're not currently going to physical therapy or receiving physical therapy guidance, let's maybe consider that if your scores are improving, keep doing what you're doing. It's working. But it's also important that you share these results with your healthcare team. They, they are going to want to know. This is, as a physical therapist, if my patients came into the PT clinic, like, hey, I haven't come to see you in three months because insurance wouldn't let me, but here's how I was doing at home within these three months, I would absolutely love that. That would give us such a head start to where we want to pick up from the exercise routine and how this can guide us moving forward. And again, just remember, if your tests are saying one thing but you feel different, your feelings absolutely matter. So even with these tests, if your scores are showing that you're not doing well, but you feel like you are, in my opinion, if you feel like you are, and the reason you feel that way is because you're tripping less, you're scuffing your toes less, you have more energy, you. Your feelings matter most. So these tests are just tools. They are not the truth. It's not. It doesn't say definitively, yes, what you're doing is working, or no, what you're doing is not working. Listen to how you're feeling. You know your body best. And we like to use these tools to track trends, not define your worth or the worth of what you're currently doing or if you need to make changes or not. It's really about the Trends.