Multiple Sclerosis: Joyful Living Guide - Healthy Lifestyle and Brain Health

23 September, 2026 Guests Interviews and Charity events

What Your MRI Isn’t Telling You About MS | Prof. Daniel Ontaneda

What It Reveals | Professor Daniel Ontaneda“My MRI is stable—but I don’t feel stable.”It’s a sentence we hear in clinic, and it deserves a thoughtful answer.In this BeeWellwithMS episode, I’m joined by Professor Daniel Ontaneda, neurologist and MS researcher at Cleveland Clinic, to explore what MRI can reveal—and why it doesn’t always explain everything you feel.We unpack the language of MRI reports, from lesions and “black holes” to brain atrophy. We discuss silent lesions, chronic inflammation, paramagnetic rim lesions and the central vein sign, alongside emerging imaging techniques that could help bring the scan and the lived experience of MS closer together.Daniel also shares his approach to monitoring scans, when contrast can be useful, and what excites him about 7T MRI and better spinal cord imaging.Your scan matters. So does your story.

Show full transcription

Hello and welcome to Be Well with MS Bootcups. Today we are talking about something that has become almost inseparable from multiple sclerosis. It's MRI. For many people living with MS, MRI carries on enormous weight. We wait for the scans, we wait for the reports, and sometimes just a few words, stable MRI scan or maybe new lesion, can completely change how you feel. But how much can MRI actually tell us? Can it explain how you feel? What does it mean when your symptoms change but your scan doesn't? Can MRI tell us anything meaningful for the future? And are there new things that we are beginning to see on MRI scan and is changing our understanding of MS itself? To help me to explore these questions, I am delighted to welcome Professor Daniel Antonida to Be Well with MS podcast. Professor Antonida is a neurologist and internationally recognized multiple sclerosis clinician and researcher at Cleveland Clinic in The United States. His work brings together MS imaging, biomarkers, disease progression, and clinical trials. Much of his research has focused on understanding how we can measure MS more accurately, in particular, the aspects of the disease that conventional clinical assessments and routine MRI scan may not fully capture. Daniel and I have crossed our paths at MS meetings on one occasion in Paris and on another in Chicago, and I'm excited to bring him into Be Well with MS and have a conversation, and I've been waiting for this for some time. I couldn't think of a better person to ask a simple question. What can an MRI really tells us about someone's MS and perhaps even more importantly, what it can't tell us about the MS. So, Daniel, welcome to Be Well with MS. Thank you so much, Agne. I am so excited to be a part of your podcast. I just wanna congratulate you on the fantastic work you do with this podcast. I think that it is really reaches a lot of people and has great information, and, really happy to talk a little bit about MRI and how it relates to multiple sclerosis. It's wonderful, and I can't wait for our conversation. So, Daniel, let's maybe start with something that sounds very simple, maybe very simple to us, but not our audience. When we show somebody their MRI scan and we point out to white matter lesion. And we say, this is MS lesion. What are we actually looking at, and what's happening in that piece of the brain tissue? Yeah. So I think one of the probably one of the most important roles of MRI in multiple sclerosis is picking up lesions. And people describe these using different words. Some people call them lesions. Some people call them spots on your MRI. And also sometimes they're described as plaques. You might have heard that. Of course, the word multiple sclerosis comes from the idea that there are multiple plaques. An MRI enables us to look at these spots in a noninvasive way. Right? And so although an MRI might not be super comfortable, it's a technique that we do where you sit in a scanner so we don't have to prod or anything into the body. It's not like supraspinal fluid, or you actually have to go in with a needle. And what we're looking at, the main thing we're looking at, are these lesions or plaques or spots. And what they are is they're small regions, typically of the white matter of the brain. And the white matter is the part of the brain tissue that contains a lot of myelin. And it's areas where inflammatory cells have gone in to that white matter and have decided to chew up, if you like, the myelin. And so, it's areas that are devoid of myelin. And once the inflammatory cells get in, chew up that myelin, then typically what happens is that spot or that lesion scars over. And that's where that word kind of plaque comes from. They're actually a little bit hardened areas of brain tissue, and it's from kind of a scarring process of the brain called gliosis. And so that's essentially what a spot is or a plaque or an MS lesion. They're basically areas where inflammation has attacked the myelin and has left a small scar. That's really important. When we think about the the word lesion, is there lesion that represents that something is not right. Also, it decodes our language, how we interpret and how we tell the information to our patients. But what is the difference between the quite often people see on their reports when they access their own records t two lesions or gadolinium enhancing lesions. What sometimes also they hear that black holes, t one lesions. So what is that? Yeah. So these are a little bit more technical descriptions of what lesions look like. And so one of the sequences and so MRI, I think of the different sequences is different staining. So if you think about perhaps if you're thinking about wood, you can use different staining on wood and will bring out different things. And those different sequences are similar in MRI. We use a t two sequence, which is very sensitive at picking up lesions. And all that means is that lesion, a t two lesion means it's a lesion that's there. It doesn't talk to us about how old or how new that lesion is. It just tells us that a lesion is present or is not present. When we talk about enhancing lesions, it's a different sequence. Like you said, t one enhancing lesions are lesions that after we've injected contrast, actually pick up that contrast and that contrast seeps into the brain tissue. This is a really useful technique and it allows us to tell if that lesion is a relatively new lesion or not. How new? We always say that gadolinium enhancement, that is when a lesion is picking up contrast, it will do it in its first anywhere from four to eight weeks of its life. So you don't have a lesion, then it typically has some enhancement in it on this t one sequence that will last for about four to six to eight weeks and then that enhancement, that contrast enhancement will go away and you'll be left just with the t two lesion. Now one of the things about the t two lesions is that they're always there from the get go. So you can almost always see new lesions as new t2 lesions, but you don't know how long ago they developed. So, say, you get an MRI in, say, January and then they repeat an MRI in June and you've got say one or two new t2 lesions that you found on that MRI all I know is that those lesions happened at some point between those two scans because t2 will pick up essentially all the lesions that have developed. Now if I give that person contrast and say one of those lesions is enhancing of those two, I can say that lesion developed in the last four to six weeks versus the one that isn't enhancing, say, all I know is that it probably isn't four to six weeks old. It's somewhere between four and six weeks before the second MRI was done and the MRI you're comparing to. And then finally, there is also this concept of black hole. A black hole is also something that we pick up on the different sequence. So it's a t one sequence. And it's described as a t one black hole many times. People might see those in their reports. And they used to be a little bit more meaningful than they are right now. When we used old MRI technology, it turned out that not all T2 lesions. Only a proportion of T2 lesions actually appeared dark on the T1 sequence. And we had always said that meant that those lesions perhaps had a little bit more destruction. That is, those were lesions where perhaps the inflammation had been a little bit more severe, perhaps the underlying wires on which the myelin is wrapped around had maybe broken, and that's a process we call axon loss. And so there is this concept that you looked at t one black holes to interrogate whether there was destructive lesions or not or whether they were more destruction in lesions. In the current the majority of current MRI sequencing that we use a different type of a t one sequence. And the ones that we use currently, almost every single lesion we see is a black hole. Does that mean that all the lesions are destructive? By no means. It just means that the technique is a little bit different. So using black holes as a differentiator to determine if a lesion is really has a lot of destruction or not, probably with these newer MRI sequences, it's probably not really accurate. So I put less value into calling or reporting on t one black holes that we did say ten, fifteen years ago. Are they related to black holes related to severe destruction and which give a bit bad prognosis for people, or the black holes could be equally be transient related to some swelling effect within the brain structures? Yeah. So once again, this applies all to the older scans. Right? If you're talking about new scans, if something's a t one black hole, generally, when on the sequences that we use at the Cleveland Clinic, which is something called an MPRAGE sequence, which is pretty commonly used, I would say, in MS centers. Almost every single lesion is a black hole. Therefore, it doesn't indicate that those lesions are more destructive. It just indicates that they're lesions. Now using older sequences like t one spin echo, which is an old type of sequence, what we found there is that, yes, indeed, at the very beginning, all lesions were dark on t one. And then there was this period of time where lesions would either stay as black holes, that is, in six months and twelve months, they continued to look dark. And then there were some lesions that reverted back to looking a little bit more like normal appearing white matter. So that is tissue that didn't have a lesion in it. And those, we thought, were lesions that were less destructive than the more destructive lesions. If you were to continue to use those sequences, yes, it could tell you something. And there were studies, older studies that indicated that people who had greater number of these t one black holes, they're they could do a little bit worse over time. Right. Okay. So it's one of their markers, radiological markers, that we would take into account when we are assessing our patients. Right? So it tells us how aggressive should we be maybe with our management if it is at very beginning of the condition that we see these black holes, so maybe that would influence how we act. That leads nicely to something that a lot of people often find quite puzzling and and is one of these things that how can somebody develop a new lesion on the brain and do not notice any new symptom at all? Yeah. That's a super common occurrence, actually. We calculate that the numbers vary depending on what study you look at. But the general number I quote is that for every attack a person has, they could be developing eight or 10 new lesions for every one attack. And you might ask yourself why. Why is it that some lesions can produce attack and some don't? Why are some silent? And the reality is that there is something called neuroplasticity. And there are areas of the brain that we call more eloquent or less eloquent. That is, if you have a lesion up here in the brain in an area where there's a lot of ability for the brain to go around that lesion in terms of transmitting the impulse or doing the function, the neurological function that it's assigned to, the brain can actually ring map that to different regions. And many times, in those cases, you don't have symptoms. There are times also where lesions aren't particularly destructive. That is that there is a little bit of inflammation, perhaps that it does eat up a little bit of that myelin, but it's not sufficient to actually block signals from being transmitted. So that's another possibility. And then finally, there's this idea of kind of eloquent or high real estate areas. So in the brain, where the relationship typically is eight to 10 new lesions for each attack, in certain parts of the spinal cord and the brainstem, so the very bottom of the brain, we have very packed wiring. And that's the wiring that is sending all the signals into our body from our brain and is also receiving all the input of the sensory signals that are going traveling into our brain. And in those areas, it's much harder for lesions to be silent. One, it's a smaller area, and therefore, a lesion is relatively larger in comparison to the tissue, but it's also densely packed tissue that can't be reworked or cannot be rerouted. And so we think that there's areas where there's probably a little bit less of neuroplasticity. That is the brain's ability to adapt and interact and come over the problem where demyelinating lesion has been. So we tend to see the relationship to be a little bit more closely related. Now there still can be silent lesions that occur in the spinal cord and the brain stem. So that still can happen. It's probably lesions that aren't particularly disturbed. Okay. So a lesion doesn't describe just one thing. Its appearance and where it tvs, it really matters. And it how it changes over time, whether it's expanding, increasing in size, helps us to understand it better over the time, and we'll talk about it in a minute. And, overall, we never count lesions. Quite often, people will say, how many lesions do I have? We can't tell to people how many lesions. And the lesion count alone cannot tell us how someone is functioning in every day. So that leads us to, getting in something that is also equally very interesting, and I see that frequently in my clinic, and I suspect you do, there there can be sometimes a disconnect of MRI which looks stable, but the patient quite often experiences symptoms. And one of the questions I hear most often is my MRI scan is stable, but I really don't feel stable. I'm not feeling the same as I used to last year, I'm different, my performance is changing, my manager is concerned about my memory, my performance. How can someone experience genuine change when there is the the conventional MRI scan is not showing anything and it's quite often reported to us as neurologists and to the patients, and we come back to say, your MRI scan is static. How do you explain all that? Yeah. Also, quite a common occurrence in our clinics. Right? This happens often where we have patients describing exactly what you just said, which is my MRI looks stable, but, doc, I feel like I'm worsening. And why would I worsen if my MRI is, quote, unquote, stable? And so there's several reasons for that. I think that in general, when we think about new lesion development, that generally relates there's a close association between developing new lesions and having clinical attacks of MS. And so those are pretty well paired. Not perfectly. Like we said, there are some people who would have asymptomatic lesions, but those kind of go hand in hand. And you could imagine a person, for example, who starts on a disease modifying medication and you have no new lesions developed, right? And so, understandably, that person probably will not have attacks. But many times, especially when people are a little bit older, but it can happen early on in the disease as well, people will notice some slow worsening. And that can be cognitive symptoms. That can be the ability to get around and walk, increased fatigue. And right now, our MRI doesn't tell us so much details about what is going on inside a lesion. Right? So what we can tell with MRI is do you have a new lesion or not? But the MRI can't differentiate a lot between how a lesion has evolved over time. That is, what's going on with the myelin inside the lesion? What's going on with the axons, the wires inside that lesion? So there certainly can be some changes that are occurring in the lesion itself that we're not able to measure. The second thing is that there can also be changes in what we call non lesional tissue. That is when you look at the brain of a person with MS under the microscope, if you look at a lesion you can clearly tell that there's some damage. You can tell that on the MRI. You can tell it when you look at the pathology. But also if you look at what is quote unquote normal on MRI, if you look at it under a microscope, there is actually some changes in tissue that we would not consider lesion. And so certainly, there can be some worsening of those processes that can be associated with worsening. And then finally, I would say that MRI is really good and really sensitive at picking up lesions in the white matter. There's a whole another compartment in the brain which is called the gray matter. The gray matter is in the surface of the brain, something called the cortex, and also in deep gray matter structures like the thalamus or the putamen. And many times, MRI is not sensitive. That means it is not able to pick up those lesions that might be occurring in the cortex. It's kinda one of these things that we're not taking a full picture of MS actually when we take a picture of MRI. And the presence of those lesions certainly can be associated with worsening. I will say that one of the other things we think about also is the spinal cord. While the pictures in the brain that we take are relatively good, I would say if you compare that with the pictures of the spinal cord, they are not as good. The spinal cord is not as crisp. The images don't look as good. Our ability to detect lesions in the spinal cord is not as good. And so many times, sometimes, you can be you can imagine a patient who has some kind of worsening of lesions in the spinal cord that you wouldn't necessarily pick up. Or sometimes, if you're not doing a spinal cord MRI, you might not pick them up either. So it's interesting that there are so many things that we can see, but at the same time, there are so many things we can't on MRI scan. And we spend a lot of time interpreting patient's symptoms, results of the MRI scan, what the report says. Maybe let's dive deep into what's happening biologically that our routine scans are simply not capturing that. What kind of I know it's quite complex, but maybe we could simplify that language for our audience to understand about the networks, about border tissues, and how the diffuse process of not forming the plaques is happening in the brains that are affected by MS. Yeah. So I think there's several things there. Right? And a lot of this can get a little bit complicated and technical, but we'll attempt to try to describe them in a way that kinda makes sense. Right? So I always think that lesions represent these waves of inflammation that are coming into the brain. And when you get a wave of inflammation to the brain, it forms a lesion. MRI, great at picking up those new lesions. Now outside of those waves of inflammation, there is a lot of other processes that are occurring in the MS brain that we think might be related to that slow worsening that people sometimes describe. I think the first one and the probably the easiest one to understand is something called chronic inflammation. So So while on the one end, you have the waves of inflammation, we consider that more to be acute inflammation, you also have some chronic inflammation. You might have heard the term compartmentalized inflammation. That's a word that describes inflammation that has installed itself inside the brain. So it's not new inflammation coming into the brain, it's chronic inflammatory cells that are in the brain. And they can occur in several areas or several compartments of the brain. On the one end, they can actually occur around the border of lesions. And so a lesion that might not look active on MRI might have some chronic activity, that's something we call chronic active lesions. And there are certain ways we can measure that with MRI. There is also a little bit of inflammation that can be found on the surface of the brain in something called the meninges. And that is the recoverings of the brain that we sometimes find tufts of inflammatory cells, chronic inflammatory cells, that might be damaging, especially the surface of the brain. We think that there's deep structures inside the brain, something called the choroid plexus, which is a structure that is in charge of building cerebrospinal fluid and circulating cerebrospinal fluid through the brain, and we think that might be another place where this chronic inflammation might be. And then finally, there is a fair amount of kind of different and changes in how the immune network is acting. So we always think about a wave of inflammation coming in as chronic and as as acute inflammation. And then when we think about more chronic inflammation, we have cells that are inflammatory cells that are probably within the brain, probably communicating with spinal fluid, probably communicating with a new compartment tissue called lymphatics, which in the brain we call glymphatics. These are like lymph nodes, but of the brain, where many times these cells are processing. And so we think about this as kind of altered immune networks, and so all those things are happening. On top of that, there's kind of processes that we call neurodegenerative, And that is basically the axons that might have been demyelinated. If they get intersected or cut, many times they suffer through a process of degeneration. They don't work correctly and they can die back on themselves, and it can produce changes distant to where the lesions are. Axons are designed in a way to work with myelin on top of them. And when axons don't have their myelin, many times they are using up a little bit more energy than they should be using. And eventually, that energy can run out, and it can cause the axon to slowly over time have a little bit of injury and death even. So those are all things that I think contribute. And our MRI measures for many of these aren't perfect, but we've already developed several that we think are really promising for this. So the future is bright, so we will be able to tell a little bit more the underlying biology once we have a better resolution, better sequences, maybe better scans available in the near future that we could see a bit more. But up until now, we have to admit that there is a limitation of MRI scan if we're using the conventional 1.5 Tesla, which limits the abuse. But we have generally have to assess the patients and their symptoms there to report to us if there is a progressive symptoms that people come and report to us. So we take that for grant because we believe that this is true, But sometimes we struggle to prove that on the conventional MRI scan, but we truly believe there is a more diffuse process and more connection of the brain that can be impaired, and we are looking into new medication, new drugs to bring into the market to help people to live their better lives and to have better control, particularly progressive MS that we are trying to find better ways of managing because it's not ideal where we are now, but we hope that it will bring more perspectives in the near future such as maybe two, three, or four years' time. And I think I would like also slightly to tackle a couple more things that recently has been published around the paramagnetic rim regions and central vein size. It become our new MRI scan language. Again, very much depends on the how good the MRI scanner, like, the high quality imaging, like, three Tesla and above MRI scan would pick up these signs. Not every service have got these MRI scanners available, and we have to work around. But can we talk a little bit of the new language we've been using in the last couple of years of our magnetic and maybe central vein sign? What what are these HSRI? Yeah. So great question about these new imaging markers. And you're right that I think there's a lot of hope in our field because we're measuring MS better than ever using MRI. And I think you're right that we're probably gonna be in a position where we I think until now, we've been great about imaging kind of that acute waves of inflammation coming in, new lesions. We've been we've really mastered that. I think the other areas is the areas that we're currently have to progress. And probably one of the ones that we progress the most is something called chronic active lesions. So, chronic active lesions are those lesions. They're MS lesions. And for some reason, they have, on their periphery, they have some cells which are chronic inflammation around them. And we think that sometimes these lesions can slowly get larger over time, that's a concept called slowly enlarging lesions. And one of the things about what's going on in that border or that rim of the lesion is that there are specific cells, which are called microglial cells, which actually are taking on iron. And because they are taking on iron, when we put anything that has magnetic properties like iron does, it shows up really nicely in an MRI machine. And so what we can do is we can apply specialized sequences. And these can be done at 1.5 t. It can be done at three t, and it can be done at 70. It's, of course, optimal to do them at seven t, but not a lot of places have seven t for clinical imaging. Not a lot of places have three t. Most places will have 1.5 t, but still can be viewed with the right sequence at 1.5 t. And basically, you can see in the very rim or periphery of a lesion, you can see a very small line of iron around. And what that indicates to us is that, yes, that that's the presence of chronic active lesions. That person has those lesions. We call them paramagnetic rims because the iron is a paramagnetic substance. And there have been studies that have shown that if people have four or more of these paramagnetic rim lesions, they're at higher risk of worsening over time. Right. And interestingly, there does seem to be some data from clinical trials that demonstrate that perhaps people respond to medications differently depending on if they have these paramagnetic rims or not. And so, especially when we're thinking about medications that might be tackling chronic inflammation, I think these measures such as paramagnetic rheumulation is gonna be super helpful. And you also asked about the central vein sign, and the central vein sign is something that we consider new in MS now, but it's really old actually. We've known about the central vein sign or we know about the central vein since the late eighteen hundreds actually. And on pathology, people actually were able to show that MS lesions or demyelinating lesions typically occur around the very smallest veins in the brain called venules. And this feature of lesions developing around veins is a hallmark of multiple sclerosis. So until recently we couldn't image them but now with advances in MRI technology we actually can determine if a lesion has a small vein going through it. And I think that helps us mostly for diagnosis. And so, when I'm seeing a patient for the first time they might have some spots in their brain but there's a lot of reasons people might have spots in their brain but it's very uncommon for a majority of the lesions to have a central vein outside of MS. So if I see that the majority of these lesions in a person's brain has a small vein going through it, I can be pretty sure, I'm a little bit more sure about a diagnosis of multiple sclerosis. So it's definitely useful for the diagnosis perspective, but it's also useful as we monitor patients. But it happens to us not uncommonly. We have people with MS who might be in their fifties, sixties, and seventies. And we're following them over time with MRI. And one of the things that we've noticed is that sometimes new lesions develop. And the question, is that a new MS lesion? Or could that be, for example, a small stroke or a small what we call small vessel disease, which are very smallest blood vessels in the brain collapse and they produce a little teeny tiny stroke, which is mostly silent. And if you're able to determine if a lesion has a central vein, you know that lesion is a new MS lesion and not, for example, a lesion from high blood pressure, cholesterol, or diabetes, or something like a stroke. So we think the central vein sign is helpful, both for diagnosis and also for monitoring people. And the idea is that these measures are like a layer. Right? They're not replacing what we do with MRI, but they're adding greater richness, greater texture to what we see. So now instead of just saying you have some lesions in the brain, I can say you have some lesions and I'm sure there are MS lesions. And also, you have some lesions that look like they have chronic inflammation in them. So I think that's useful information for clinicians and for people with MS because hopefully, one, it will help us decide on treatments. And two, it also will help us develop those new treatments. So when we use these measures in a clinical trial, they can become very powerful markers of saying this person might benefit if they have, say, a large number of paramagnetic revolutions. This is a beautiful way of monitoring betten. It gives us more accuracy. And we're heading into precision medicine here by having these radiological markers, which indicates whether somebody has got chronicity or definitive lesion because we always get puzzled in our clinical spaces to differentiate vascular events versus demyelinating plaques. Always a headache for us, but it's I always say to my patients, it's our problem. This is our headache, not yours. Don't you worry. Let's investigate this and get to the bottom as much as we can because we really want to be accurate because that next step is how can we modulate your immune system? And that dictates us the more data we have of your brain and the body, the more accurate we are going to be with our decision making processes. The other very important aspect I would like to discuss is a brain atrophy. And quite often, we see that in our reports. People can access via their apps and Epic and look at their EPR system looking and seeing brain atrophy. What does that mean, and how should they be worried about brain atrophy? What is it? Dan, can you explain? Yeah. Yeah. I think this is one thing that causes people a lot of concern when they read it in their reports. Now I'm gonna give away a secret here. We're not gonna go into anybody's specific age, but chances are that Agnes' brain is already suffering from some volume loss. Mine certainly is. So around age 30 or so, 35, 40 depending on the person, what we know is that the brain starts shrinking. That is a normal process. It's associated with aging. And what studies have indicated is that people with MS, their brains can, not always, but can shrink at a greater speed than just general aging is associated with it. And that is something that I think we are really good about using to inform how people do over time. So one of the best prediction measures on MRI, that's a measurement that I take now that predicts how people do in the future is how much or what's the size of the brain itself. Now, those studies I think that kind of say if you have more brain atrophy, the prediction is that people might do worse over time. I think it's true only when you look at large groups. And when you look at the individual, it's much harder. Now, the idea behind this is that certainly if you're developing new lesions, there's probably the brain has these lesions, they inflame, and then they shrink down, and they're probably shrinking down forward. But the tissue, the normal appearing tissue of the brain probably might be shrinking. We know that the surface of the brain or the cortex also is shrinking over time. And, of course, it stands to reason that if people have greater amount of brain volume loss, they of course will do worse. And there is really compelling data that show that our most effective treatments, what we call high efficacy treatments, are also the best treatments to prevent that brain volume loss. So definitely, there's ways that we can block this. And it's similar to how we block lesions. You can also block MRIs. Now, some people have said, maybe we should have a goal, right, of how much brain volume loss there should be. Right? Like, you say, if you have no lesions, it means your medication is not working. You could say, maybe if you're losing a lot of brain volume, maybe that means your MS medication is not working, you should stop. And then people have attempted to do that. And it might still be in store for us in the future. But the issue with brain volume is that there's a lot of variability, a ton of variability. We have examined this, and there's specifically a person who works at my center who did a very interesting study where he took people. He hydrated them, gave them a ton of a Gatorade, and took a picture of their brain MRI, and their brain was a certain size. And then he asked them to not drink anything for number of hours, repeated the MRI, and that was as much brain volume loss that could be accounted for a year or two. Right? So the brain is constantly on flux. He also did a study where he compared how were the brain how does the brain look like in the morning versus how does the brain look at the end of the day. And it turns out that the volume of change is very similar to the annualized volume of change that you see in patients with MS. And it's a very noisy measure. And so part of the thing that we're trying to do with MRI is trying to get away of that noise. Right? If you take a brain MRI from you today and I've had a ton of water, my brain will look big. And then I do a repeat MRI, and then it looks small. And so it happens not infrequently when we're seeing patients that maybe something happened that day or maybe the radiologist looking at the MRI thought that you had a lot of brain volume loss, and they put that in the report. And people are very concerned about this. And I like to remind them that these measures are measures that can vary. The brain is not static. It's constantly changing volume. And I think we have to get better at making sure that we measure that a little bit more a little bit more accurately. And perhaps one of the things of doing that is one better MRI machines, and the other one is better software that we use to measure the size of the brain. So all of those probably will be moving forward, getting better. And hopefully, we'll get to a point where someday, a single measurement, we have to make sure that we account for biological factors. We have to make sure we account for age. We have to make sure we account for gender, for example, because the size of brains are different across men and women. We have to take into account how long you've had a mass. We have to take into account make sure that you're hydrated correctly, and also that the MRI is taken on the same MRI scan. Right? Because it can be a ton of difference from one scanner to another. So careful interpretation is important. We don't judge when we see on the report brain atrophy. We have to take into account hydration, dehydration, swelling, acute events, acute relapse maybe, no relapse, lifestyle implication as well. So people, we are at BwinMS broadcast, so we have to talk about what best thing you can do in this life is giving up smoking, doing exercises, sleeping well, managing your stress level, because all that influences, and we all really want to biohack your aging process living with MS. I always often spend my time with patients saying that if you can do some exercise, if you can walk around the block, if you can run, all that matters because we want to slow down the aging living with MS. We want to slow down this brain loss if it happens as part of MS and as part of the aging. At least we can control a bit of the aging process, which can be accelerated living with MS almost twice, depends which study you read. But it's important to keep your brain healthy with a big reserve that you can have the capacity to recuperate after the events and episodes and maybe, unfortunately, experiencing new plaques and lesions. So but at the same time, don't feel disappointed if you are reading on the app or you're accessing your reports that it says brain atrophy is not the end of the world because it's still subjective measure. It very much depends on various different factors as Dan has missed it as well as experience. The re reporter, the radiology who looks at the scan may interpret in one way. The second radiologist looks at the same scan, interprets different ways. So maybe this is where the future is coming, having some compute algorithm algorithms, maybe AI, maybe some other measures that will be more accurate interpreting the brain volume. Moving forward, I think the future is here in some degree, but it will be better as the time goes. How often MS people should have MRI scans, and should they all have with a contrast or non contrast? How does that work in service? Yeah. So I think we know that monitoring MRIs in MS is definitely useful. And I would say that, typically, after we've made a diagnosis of MS, we're typically gonna be starting a disease modifying treatment. And it's really common for us to get what we call a rebaseline MRI. And so that's we're gonna put you on treatment, have you on treatment for about six months, and we're gonna repeat an MRI. And I always tell people that MRI, we interpret with a lot of caution. No lesions on that MRI doesn't necessarily mean that much. Right? Because, say, like, your MRI you're comparing to was before they diagnosed you with MS. Right? And so there's some time between when MRI was done, when somebody diagnosed you, when they diagnosed you, to when they started you on the treatment. And it's unlikely the medication doesn't work for the first several weeks after you've started a treatment. So there's some time in between those two MRIs that you were actually not on treatment. And therefore, if there's a couple of no lesions there, I don't get particularly worried. Now it is true that first MRI, I do like to use some contrast. Because remember the contrast, if a lesion picks up that contrast and if it's enhancing, it tells us that lesion developed in the last four to eight weeks, right? So you can imagine a person, you know, say they were diagnosed in December, started their MRI, they started their disease modifying treatment in January and we get a repeat re baseline MRI in June. If there's new T2 lesions, which are just new T2 and they're not enhancing, that means they develop some time in between the two MRIs. So I'm not particularly aware of them. But if there is contrast enhancing lesions, if there are acute lesions, it means that those lesions developed in the last four to six, four to eight weeks. And generally, I think that the medication probably should already be working at that time. So for me, the contrast at that first six month MRI is really important, and it can give you an indication that you might need a different medication. For some reason, your body doesn't like it. It is a signal to your neurologist to say, maybe we should think about something different. And so I think it's a really useful tool. Then from there on out, so after that first six month MRI, this is where there's a little bit of more variability in clinical practice. I like to, you know, keep a close eye on things the first, I would say, eighteen, twenty four months of treatment. And so I typically do an every six month MRI thereafter for probably about eighteen months, sometimes twenty four months. And then after that, I start doing a yearly MRI. And on all those MRIs after six months, as long as you're doing the MRIs regularly, I typically don't recommend using contrast. Why? Because you know that their medication is fully effective, and so I I don't care when new lesions develop. If a new lesion develops, it means the medication isn't working. So the contrast doesn't give me as much information in those scenarios. And then there's a bigger question of whether, eventually, we have to reduce the frequency of MRIs. And the reality is that we probably do. After a person's had several stable MRIs, then you can think about not doing them every year anymore and moving them out to every two years or every three years, and then maybe even more than that. And I think that things are changing a little bit in our field right now because there's been studies that have recently been published that demonstrate that doing a yearly MRI might be a little bit of an overkill, especially with highly efficacious medications. And people have calculated how many MRI scans do you have to do before you find a lesion. It turns out that you have to do a lot of MRIs before you find a lesion because they're just not as frequent. So this idea of doing yearly MRI while a person has MS has been challenged a little bit as we have medications that work really well and really do a really fantastic job at brigading lesions. So it's not uncommon when we start an MS patient out. I think they go through an initial period where they really wanna get their MRIs done frequently because they wanna make sure the medication is working. And then after a while, they were like, do I need to do these MRIs every year? Because every time we get them, they say I don't have any new Yeah. So I think when we're thinking about MRIs, I think it it really has to be a personalized decision. And Yeah. Take into consideration how old a person is for the frequency of MRIs, how recently they had an attack or they had new MRI activity, how long have they been on treatment. All of those are decisions that can be made with your neurologist. There's no one single answer if this is the perfect amount of MRIs you need. It's really up to the individual characteristics. So it's personalizing the, like, monitoring approach for people and individual living with depends on the drug, the patients have, which drug, what the response is. Are you worried? Are you concerned or not? And, also, just briefly to mention that there are silent lesions in the spinal cord, and that's roughly around ten percent that and we're not often do doing the spinal MRI scans these days because of the capacity. We want to get more people to have MRI scans a day, and then we tend to have MRI scans of the spine every few years. In particular, patients had before spinal cord onset MS, so that's something that we would only maybe focus on the spinal cord if there are lesions only in the spinal cord. So their ability is huge. And I think what the leisure is here that we have this opportunity to personalize the the monitoring pathway and approach, which is quite cool. Of everything happening in MS imaging research right now, what are you personally most excited about? Yeah. I would say that for me, the the most exciting thing is really how we have a seven t scanner at the Mellon Center, and it's a seven t scanner that we use both for clinical MS and for research. And I would say it's getting MRI to the point that you're looking at almost it's looking under a microscope. So it's interrogating the structure of the brain in such depth that you are learning things about lesions. You're learning things about normal appearing white matter that we didn't know before. And I think it really is gonna help us understand why a person who says I'm worsening, but we continue saying that MRI is stable. So for me, probably the biggest and the most exciting aspect of MS is taking that that mismatch that we have right now and getting them a little bit closer. And I think we do this partly with kind of improved sequences, partly by better resolution. So it's like taking a picture with a better camera if you like. So the resolution increases. But it's also new sequences that are interrogating different processes in the brain. And then I think one of the other things that is something that has me really excited is the ability to do better spinal cord imaging. We just are developed a coil, which is a special type of device that goes around a person when they get the MRI. People who've had MRIs will remember it's sometimes a little bit of a cage that goes over your head. That's called a coil. And the coils help you image areas of the body better. And so we just developed the coil for the spinal cord, which is a dedicated coil. We haven't taken any pictures of people with MS, but we've taken a couple of pictures of people that are just controls. So these are some of the MR physicists in our lab. And the pictures we're getting from those spinal cords are it's like you see the spinal cord perfectly, like you would see in an anatomy drawing. So I'm really excited that if we're able to translate that into what MS looks like in the spinal cord, we're gonna have a much better picture. I think, historically, one of the things we haven't done well in MS is characterize what's going on in the spinal cord. And a lot of times when we think about progressive MS, which is a big unmet need in our field, What we're thinking about many times is degeneration in the spinal cord, and so it's coming from the spinal cord. So having better images there will accelerate clinical trials, will make us better to prognosticate, better to explain why a person is feeling the way they're a person they're feeling, and then finally, of course, to get some medications into them that might help with those processes. Exciting news of your research. And if we can only accelerate the sensitivity of the imaging and capture more changes and early changes within the spinal cord. For the audience, imagine that spinal cord is just a thumb size structure. It's such a sensitive area of your central nervous system that it's impossible not to feel the impact of MS if the spinal cord is affected. And we really want to capture that in the very early days before even the full blown longitudinal spinal lesion starts occurring on the imaging. We want to see maybe a hint of that and strike the immune system with available drugs in this world. And we have a lot to offer. I think we are standing in a very strong position where we are modulating the immune system, but it's just knowing that there is a change and we need to do these first initial steps to control the disease. What is one thing that you wish every living person with MS understood about their MRI scan? What would it be? It's I I think it's a combination of things. On the one end, I think MRI I think people know and recognize that MRI is our most powerful, most used biomarker. And MRI has revolutionized how we treat, how we diagnose, and how we monitor MS. So its effect has been profound. And many of the treatments we have today are thanks to MRI to be able to screen therapies to make sure that we get therapies into people that are the most effective. So I think that's the kind of one message. The MRI biomarker is our biggest ally when we're diagnosing, treating, and monitoring multiple sclerosis. And then I think the second thing is to recognize as as good of a tool it is, it has a lot of drawbacks and weaknesses and it really doesn't tell us the full picture of what MS is. And so, many times, I like to reflect back with patients that we shouldn't just tone in on just on the MRI. The MRI is important, but we have to think about you as a whole. And for us who are doing MRI research, I think my goal is to make sure that the MRI better reflects that whole picture where it currently does not. So just recognize it has limitations. It's a good tool. We're working to improve it. And just remember that a single MRI report doesn't set the stage for what your MS is gonna look like long term, can change, and it's not perfect. So just I would say realize the importance of MRI, but also take it with a grain of salt. Yeah. Totally agree. Daniel, thank you. I think one most important message from our conversation today is that MRI scan is an extraordinary powerful window into AMS, but it's not their whole view. Okay? So we we may have a limited view. And a scan can reveal changes that person cannot feel, and a person can experience the real changes that conventional MRI scan may not fully explain. The research we've discussed helps to explain why MRI scan results someone experiences can sometimes seem to tell different stories, and we believe that all your stories that you're telling us in our clinics are valid. We truly appreciate, and both deserves careful attention. A useful conversation after a scan brings them together. What has changed on the images? What has changed in your life? And what do those changes mean for your care. As a research developer, we may be able to bring together imaging, blood biomarkers, which we haven't discussed, and I wish we had more time to do that. Neurological examination, cognition, digital markers, all that creates a a new world of interpretation and in a very useful way. Dan, thank you for sharing your knowledge, for being so open about your management, your interpretation of the very complex science, and I believe that Be Well with MS community is going to truly appreciate what we just discussed. And it was an absolute pleasure having you with me today. Yeah. Thanks so much, Agne. Likewise, I had so much fun today, and hopefully, this will be helpful for people and just to reflect on the great resource you've created for people with MS. And for everybody watching, I think these are useful, and I think they add a little bit of context to things that sometimes, you know, as clinicians, we sometimes forget to talk about with our patients. So having somebody like Agne reminding people about all these things is making our job easier as well. Thank you so much. Thank you for listening to Be Well with MS Podcast. Until next time, don't forget, stay curious, ask questions, take care, and now be the one who gives up. Always fight for your rights. Ask the right questions, see your neurologist, speak to everyone, including people living with MS. Build your own community. Be social and be well. Until next time. Bye for now.

#

23 August, 2026 Easy Explained MS by Dr Agne Straukiene

Assistive Technology for MS: Everyday Heroes, Wow-Tech & 7 Questions to Ask Before You Buy

This episode of the BeeWellwithMS Podcast opens the “assistive technology toolbox” for people with MS, from everyday tools to specialist equipment and emerging tech, using catalog labels (established, specialist assessment, emerging/research, limited access) and emphasizing function-first choices over shopping. It highlights smartphones as a major assistive device (dictation, screen reading, magnification, captions, reminders, routines, and travel/toilet planning), mobility options like AFOs, FES, walking aids, wheelchairs and power-assist (with proper assessment and environmental adaptations), and low-tech adaptations for hands plus workplace support via Access to Work. It covers brain fog, fatigue planning, heat sensitivity and cooling, bladder diaries and planning, smart home control, and communication/AAC including voice banking. “Wow shelf” examples include the Cionic Neural Sleeve, grasp gloves, stair-climbing wheelchairs, rehab robotics/exoskeletons, eye-gaze communication, and camera-enabled glasses, ending with seven practical questions before trials or purchases.

Show full transcription

Hello beautiful people. Just a quick question. Which of these are assistive technology? This phone? Or this very futuristic leg sleeve? The answer is both. And the plot twist is here that a phone may be one of the changes for your Tuesdays. Hello, and welcome to be well with MS podcast. Today, we are opening the assistive technology toolbox, the things people with MS can use now. The specialist kits that needs proper assessment and the exciting technology that makes you say, we live in the future, followed immediately by, does the NHS National Health Service have a referral pathway into the future? We will cover mobility, hands, brain fog, fatigue, heat, bladder control, bladder planning, communication, home control. I will show you the most useful everyday categories from catalog that I have just created. And the most exciting devices worth knowing about without turning this into 106 item shopping channel. One important rule before the gadgets, this is the general information. I'm not giving you personalized advice or recommendation. The catalog uses four labels, establish specialist assessment, and emerging technology, and reset or limited access. Those labels matter because you don't want to suddenly buy all the existing and nonexisting things. We're gonna talk about walking stick, functional electric stimulation, and a robotic exoskeleton may all involve walking to improve your gait, but they are not three flavors of the same purchase. Also, the catalog, which I have produced and I'm going to share with you all, does not give patient usage re rankings. And when I say everyday heroes, I mean technologies that is described as established and widely available, plus familiar consumer tools that can support daily life. It's not, popularity chart. It is not a popularity chart, and a name product is an example only, not an endorsement. So the best question is not what gadget should I buy, but what everyday task do I want to make safer, easier, and more possible? The question is less glamorous, but it saves money, frustration, and, you know, the drawer of full of chargers that all look identical. You know that feeling. We all have that. So everyday hero, number one, the device already in your pocket. Guess what? Let us begin with the busiest member of assisted tech team is your own phone, the smartphone, I mean. It can do voice assist and dictation when typing is tiring and unreliable. It can read screen aloud, magnify text, increase contrast, and use a camera to read print or describe selected objects. It can caption nearby speech. It can hold shared calendars, repeat reminders, step by step routines, and location prompts. That means one familiar device can help with their hand weakness, vision, hearing, memory, planning, and work. Not perfectly and not for everyone, but often with no new hardware. The secret is configuration. How do you set the settings on your smartphone? Accessibility accessibility features hidden three menus deep are not accessible. They are on their small administrative holiday. For brain fog, to choose one main reminder system. One, not seven apps, two paper planners, and the sticky note attached to the kettle. Notification overload can make the important prompt vanish into a crowd of messages announcing that someone you just met once has posted a reel. For visual information, the catalog name Seeing AI, artificial intelligence, Google Lookout, and Be My Eyes. For hearing, it names Google Live Transcribe or Apple Live captions. Accuracy can change with noise, lighting, distance, and software updates, so check safety critical information another way. And for bladder or travel planning, a phone can show The UK toilet map. How exciting. You can plan your journey by locating the toilets available publicly. Changing places, facilities, surveyed venue information is on access able. Rail help through passenger assistance and step three options in TfL Go. Verify an essential lift, opening times, or assistance booking directly. Live accessibility information can be incomplete. Another everyday hero, number two, is mobility that protects participation. So we are talking about if toes drag or the foot catches the floor, two important pathways are an ankle foot orthosis or AFO and functional electric stimulation, which we call as FES. And AFO is a fitted brace that supports ankle and foot position. Many of you already tried and used that. You didn't like it. I often say go back to the physios, explore again, try again, try different model, try different, AFO. It may fit you better. Don't stay and assume, this is not gonna fit me, etcetera, etcetera. If AFO is not fitting, then there is another option that is being usually offered by the physiotherapists is functional electric stimulation. FES, times electrical stimulation to help suitable people lift the foot during walking. It's exciting when it happens, and it really improves the mechanics of the gait. The correct starting point is a gait assessment, not choosing whichever product has the most heroic slow motion advert. Walking sticks, crutches, rollators are established tools too. The Rite Aid can widen support, reduce load, and in the case of some rollators, provide a seat, for example, a seat. You know? You can walk and sit down if you're tired. That is not giving up. That is bringing your own VIP launch to the queue at the pharmacy. You know, when we have to wait for a prescription, sometimes it takes twenty minutes, thirty minutes, or longer so you can sit down on your walking aid, a walker, or later. Height, grip, brakes, and walking pattern still needs to suit the person and the actual environment. Okay. Let's talk about the manual wheelchairs, powered wheelchairs, mobility scooters, and power assist assist wheels can extend range and conserve energy. Using powered mobility for a long journey does not mean someone has stopped walking. It can mean they have saved enough energy to work, see friends, chat, cook dinner, do re rehabilitation afterwards. The goal is in their life not winning a private competition against your own battery percentage. Wheelchairs and seating need assessment because posture, pressure care controls, and real world fit matter. Power control can also be adopted for hand weakness, tremor, head movements, or switches. This is where the wheelchair service, occupational therapists, physiotherapists, and rehab engineer earns their screen credit. And remember, the environment. Sometimes the solution is not to train the body harder. It's a rung, an automatic door, a step free route, better seating, or a journey planned around working lifts. The environment is allowed to do some of the work. Hero number three for everyday. Make the task demand less. Assistive technology is not always electronic. Build up handles, angle, utensils, non slip mats, and a low force fastenings can reduce grip and precision demands. They're not glamorous neither is dropping a hot saucepan, so I'm comfortable with the trade off. For computers, voice typing can reduce keyboard demand. Tackle ball, compact keyboard, keyguard, head mouse, switch, or eye control can move the workload away from repeated hand movements. At work, the catalog points UK view viewers towards the access to work for assessment, equipment, software, travel support, or training where eligible. It's amazing opportunity to explore that further using this catalog which I will publish for you to review. The useful test is not whether a device work for five impressive second in a showroom. Can you set it up? Can you tolerate it? Can you use it on a difficult day? Does it work in the app, kitchen, office, or classroom where the task actually happens? Okay. Let's talk about the brain fog and fatigue outsource, the remembering not your judgment. Brain fog can turn finding your keys into escape room designed by someone who dislikes you personally. It's really annoying. Item trackers can help locate keys, bags, or mobility equipment. Shared calendars with visual schedules, smart speaker routines can prompt medication, leaving home checks or steps in a familiar task. Like, you can't remember the recipe that you want to cook a something exciting for your family as part of the dinner. And you can kind of ask your smart device to remind you this recipe. Maybe you want some reminder, which is essential to inject your disease modifying therapy. You set this up. Keep the system simple, enough to work when you are fatigued. You don't want to overwhelm the system. The system then overwhelms you. A routine that requires perfect concentration to configure is not a routine. It's it is unpaid IT support. For essential prompts, keep an unconnected backup and review privacy, battery needs, and location sharing. For fatigue, the catalog is refreshingly blunt. No consumer device directly measure MS fatigue. Activity watches can show movement, heart rate or sleep trends, but they do not diagnose you with fatigue. Use trends as a conversion aids, not scores to chase because it can be overwhelming when you suddenly start monitoring everything you have in your body, pulse, blood pressure, sleep, everything. Your watch is a witness, but not a disappointed PE teacher. Digital planners, timers, and planned pauses can make an energy budget visible. Automation can reduce repetitive effort, dictation, macro smart plugs, remote blinds, and powered mobility for selected journeys. The point is not to automate a person out of their own life. It is to spend limited energy on the part of life that matter. Okay. So if the if the blinds automatically comes down, that's amazing. You save that kind of a journey going and and doing your blinds. AI tools can summarize meetings, can write you transcription, simplify instructions, digest all the information, give you key elements to digest what has been written to you, and make checklists from that conversation. They can also be confidently wrong, as you know, delusional as we call. Check important outputs, use an approved accountant at work, and do not pay sensitive health information into a system before you understand how the data are handled. Okay. Let's talk about the heat, wave, and bladder planning. Practical beats are glamorous. Heat sensitivity is where the humble portable fan walks onto set and steals the entire episode. Cooling vests, wraps, towels, insulated drinks, smart thermostats, blinds, and weather alerts can reduce heat exposure and help plan for cooler periods. Compare cooling duration, weight, skin tolerance, controls, noise and charging. Who wants to sleep in that room of the fan that is so noisy? It's difficult to fall asleep because of this noise. Because fan is is that too heavy to carry just tiny winged machine with ambition. For bladder incontinence, digital diaries can record drinks, voice urgency leakage, and help prepare for clinical conversation. Discrete reminders can support a clinician agreed routine. Toilet map finds public toilets. Changing places identify as large facilities with a hoist and adult size changing bench and ex and access able gives detailed venue information. Brilliant. New or worsening bladder symptoms need clinical review. That's important that you still talk to your clinical teams if you are concerned. An app, alarm, or map supports a pathway. It doesn't diagnose the cause. Check opening times and the exact facility you need before traveling. Before you go out, before you leave home, you just check on the app. Where is the toilet? Where is the toilet that I can safely use? Okay. Let's talk about home, home control, and communication. Let the environment answer back. A voice or app controlled to my home can operate lights, plugs, heating, and entertainment. Who doesn't want to have this beautiful music playing in the in your house, in your flat, wherever you live? Start with a one high value task and keep a manual backup. Alexa, turn on the lamp. I didn't find a group or device name again. I haven't got that connected. It's wonderfully simple until the Wi Fi decides to take annual leave. For more complex needs, specialist environmental controls can connect switches, eye gaze, wheelchair controls, or communicate devices. Automated doors, curtains, and windows, powered beds, riser chairs, wash dry toilets, standing aids, and hoists all need the right assessments, space checks, and training. Communication technology ranges from a simple voice amplifier to AAC apps that speak typed or symbol based messages, and robust speech generating devices controlled by touch, switches, head movements, or eye gaze. Voice banking can also create a more personal synthetic voice for possible future needs and is worth discussing early with a speech and language therapist. Okay. We are coming into the wow shelf. Exciting technology, Honest Labels. Now for the technology that makes the thumbnail, number one, this Ionic Neural Sleeve. It combines gait sensing with stimulation across several leg muscles and may support foot drop and aspect of gait. Very, very exciting. Also emerging with the limited MS specific evidence and access, the catalog says clinician linked access is primarily in The United States. The gadget can look like Iron Man. The fitting process should still look like health care. Number two, carbon hand powered grass glove. Sensor detect intended grip and artificial tendons add closing force for selected users. It is commercially available in parts of Europe and The US, but it belongs in an occupational therapy led real task trial. The question is not, can it crush a dramatic orange for camera? It is, can it help with a cup, fork, zip, or tool that matters to you? Number three, the Cibo stair climbing power wheelchair. Tracks and sensors can negotiate compatibility straight stairs in selected environments. It is spectacular and it's not magic. Stair dimensions, training, rescue planning, regional access, and the rest of the journey all matter. The staircase must pass the audition too. Number four, rehabilitation robotics. Systems such as HOKOMA and DAGO can provide dynamic body weight support for overgrown or practice, while Loko mat offers robotic treadmill gait training. Rigid powered exoskeletons can support standing and stepping for carefully selected users. These are specialist rehabilitation tools, not casual home fitness equipment with extra lasers. Number five, eye gaze communication. A speech generated device can let someone use their eyes to speak, access a computer, and sometimes control the environment. This is not a novelty. It can be a route to autonomy. It needs specialist ACC assessment for access method vocabulary, mounting voice, and long term support. Number six, hammer enabled glasses and dedicated low vision wearables. Consumer AI glasses may help with selected visual description or text task. Dedicated products can read text and identify selected objects or faces through audio prompts. So if you ever had optic neuritis and you become blind and wore another eye or both, this is a quite nice resolution. Features vary by market and update, and consumer glasses are not a substitute for mobility training or certified low vision aid. It's worth mentioning app controlled AI hearing aids that classify listening environments, software such as VoiceAte that learns some nonstandard speech, also wearable bladder ultrasound systems that estimate fullness of your bladder. When you lose the sensation that your bladder is full, so the sensor is able to pick up. And predictive fatigue research using symptoms, activity, and physiology. Fascinating. Yes? I think it is. Routine proven answers for every person with MS. No. Not yet. Okay. What are the seven questions before a trial or a purchase of these fancy some of the things that you are able to buy online and maybe get that via specialists and having the specialist input in assessment. Before you try or buy anything, ask seven questions. One is purpose. Which exact task should become safer, easier, or possible? Number two, what's the evidence? Is there evidence for this exact use and for people like me? Number three, fit and fatigue. Can I put it on? Can I try it? Can I tolerate it and operate it on a difficult day when I'm so exhausted and fatigued? Number four, real life. Does it work on my floors, stairs, transport desk, bathroom, and rainy pavement when it's a bit slippery or maybe a lot of slippery. Not only in the showroom with the perfect lighting, perfect flooring, and suspiciously enthusiastic salesperson. Five, support. Who fits it, trains me, reviews it, repairs, and helps when it fails? Number six, full cost. Include subscriptions, hidden cost, how much upfront, how much monthly, daily, yearly, what are the batteries, consumables, maintenance, repairs, and replacements. Number seven, privacy. What health, voice, image, or location data are collected, stored, and where it's stored? Shared or used to train AI maybe? All that you need to know. If a device needs an account, a camera, and a 14 permissions to turn on a lamp, you are allowed to ask questions. Is it really worth me doing this? And always plan the backup. Spare cable, charge, power bank for approved customer device, printed contact details, manual control, alternative communication route. Modern independent often arise with a charger. Resilience arise with a second plan. Okay, guys. So it's time to wrap up. So remember, the function is first, the technology is second. The big takeaway is simple. Start with function, name one activity that has become difficult, then compare the simplest established option, the relevant specialist pathway, and any emerging technology, honestly. A 10 pound adaptation that works every morning can be more life changing than a robot you cannot access and you cannot use. You don't know how to use it. My everyday hero shortlist is phone accessibility, reminders and captions, well fitted walking, and seating support, adaptive handles, voice access, cooling, smart home control, and toilet or journey planning. Where's the nearest toilet next to me when I'm planning to go somewhere? Right? It's important. My wow shelf shortlist is the neural sleeve that has got FES in incorporated to improve the food drop, powered grabs glove, stair climbing wheelchair, rehabilitation robots, eye gaze communication, and camera enabled visual assistance. These are my top notch Wow Shell shortlist. Tell me in the comments, which everyday task would you most like technology to make easier? Now which gadget, which task? Okay? And that is where the useful conversation begins. If this helped, don't be afraid to share, comment with someone who you think assistive technology begins and ends with a walking stick. Subscribe to be well with MS podcast. And until next time, be well, be curious. Let the technology do more of the work for you. Bye for now. Stay well.

#

9 August, 2026 Guided meditation with Dr Agne Straukiene

Unpredictable MS Symptoms: Finding an Inner Anchor

In this BeeWellWithMS podcast episode, the host reflects on an animated infographic listing many possible MS symptoms and the responses it sparked, including the feeling that “everyone thinks I’m okay” and the idea that an unpredictable body can reveal steady inner strength. The episode focuses on how one of the hardest parts of MS can be not knowing what version of your body you’ll wake up with, especially when changes aren’t visible to others. Rather than trying to “fix” the body, the host introduces mindfulness as a way to distinguish between symptoms and the struggle built around them, meeting what is present without fighting yourself.

Show full transcription

Hello, and welcome back to Be Well with MS podcast. Today, I want to talk about something that came from a simple image I recently shared on my media channel. I showed one person, a woman, who's casually dressed up. It's an image which is animated and there are many possible symptoms of multiple sclerosis listed such as fatigue, pain, cognitive changes, altered sensation, weakness, bladder, bowel issues, mood changes, sleep problems, vision problems, balance problems, you name it. But something interesting happened. People didn't just respond to their symptoms, they responded to their feeling behind them. And one person wrote, everyone thinks I'm okay. Another describes something happening beneath the surface and somebody else wrote something beautiful such as an unpredictable body forces you to find a steady strength within. That stayed with me because perhaps one of the hardest things about MS isn't simply having MS symptoms but it's not knowing which version of your body you are going to wake up with next morning. Some mornings your legs cooperate, another day they feel heavy. Yesterday, you could concentrate. You were fully alert. Today is different. Your brain feels wrapped up in a fog. Perhaps nobody around you notice any of it. It's inside you. You may look exactly the same. You may even dress the same clothes, look the same, but you feel different. And yet your internal landscape can be completely different. In today's episode, it's not about fixing that body. It's about something quieter. How do we create a little steadiness, an anchor as I like to call, when the body itself doesn't always feel steady? What do we do? There is useful idea in mindfulness. We can distinguish between what is happening and what the struggle we sometimes build around what is happening. There might be fatigue and then you may say, I shouldn't be this tired. There might be pain and then you may think or say to yourself why is the body doing this again? There might be brain fog and then you're used to able to do things and then you say, what's happening with me? There might be uncertainty and then the mind travels forward. What if this gets worse and you get into these various different stories in your mind. These thoughts are completely understandable, they are completely normal. Mindfulness isn't asking you to pretend that they are not there. You just accept it. It's there. You fully understand that. You fully feel that and it's okay to feel that. And it certainly isn't suggesting that MS symptoms can simply be meditated away. Instead, mindfulness gives you another possibility. Meet what is here without immediately fighting myself for having it. And that is very, very different. So let's maybe find the a bit of a space for a short practice, meeting the body where it is, as it is, in your own time and always. If it feels comfortable find a position where you are feeling the most relaxed, where your body can be supported, whether it's lying down on the floor or sitting. You don't need to close your eyes if you don't like it. But you can do if you wish. And there's nothing you need to achieve. Begin simply by noticing that you are here in this moment. Notice the support underneath your body, whether it's the seat, whether it's the floor, whether it's your bed, chair, the floor beneath your feet. And notice one breath, not a special breath, not necessarily a deep breath. Just one breath your body is steady taking. Perhaps silently say this is my body today Not yesterday's body. Not the body I think I should have. This body as it is now, today. Now gently notice what is most obvious in your body. Perhaps heaviness, tingling, burning, warm, tightness, maybe pain, maybe restlessness. Maybe all of these symptoms at the same time. Or maybe you can notice something more pleasant or neutral. There is no need to search for symptoms. Just notice what is already asking for your attention right here, right now. And instead of the immediately asking how do I get rid of this? Try asking what does this feel like right now? It's more curiosity rather than judgement. Where exactly do you feel it? Does it have an edge? Does it move? Is it constant or intermittent? Does it change moment to moment in intensity? You're not investigating your body for danger. You're simply listening to what your body has to say. Now imagine creating little space around whatever sensation is present. You don't need to like it. You don't need to approve of it. Simply allow to be here for this moment. Perhaps quietly saying this is here and right now. Can I be kind to myself within this? Can I be kind to myself while this is here? Notice how different that question feels from how do I make it this disappear? If the sensation becomes uncomfortable or maybe overwhelming, move your attention away from it. Feel your feet. Listen to the sound in the room. Open your eyes. Mindfulness is not about enduring discomfort. You are allowed to choose where your attention goes. You are more than the symptom. Now, broaden your awareness. Notice that the sensation is only one part of everything happening right now. There may be fatigue and also breathing. There may be tingling and also feeling of your hands resting. There may be pain and also sound somewhere nearby. There may be uncertainty and still this moment all at the same time. This symptom is real, but it doesn't have to occupy the whole landscape. Imagine looking at the sky, A cloud can be large, dark, impossible not to notice, but the cloud is not the entire sky. It's just a little detail. In the same way you're experiencing a symptom and you're not the symptom. Listening instead of battling. Now ask your body one final question. What do you need from me today? Don't force an answer. Perhaps the answer is rest, moment, good quality of food, quiet connection, fresh air, medical advice, a slower day? Or perhaps there is no answer at all, and that's fine too. Then gently say to yourself, I don't have to experience today the way I experienced yesterday. I can listen again. I can begin from here. Take one comfortable breath. Notice the room around you. And when you're ready, continue with your day or night. Depends where you are and when you are doing this. Living with MS can sometimes mean becoming extraordinarily attentive to your body. But there is a difference between monitoring the body with fear and listening to the body with curiosity. Perhaps this is something we can all practice. Not what's wrong with me today, but what's here today. Not why can't I do what I did yesterday, but what is possible today? And not everyone thinks I'm fine but perhaps my experience is real even when it isn't visible. Your body may be sometimes unpredictable. Mindfulness doesn't promise to make it predictable. What it can help us cultivate is something different. A steadier relationship with ourselves inside that uncertainty. And sometimes that's where strength begins. Thank you for spending a few minutes with me. I really wanted to reflect on this last media post that I just published and it got a lot of attention from thousands of people I've never seen before. So thank you to everyone who shared, reshared, who liked, who saved this simple infographic with a human being and multiple symptoms of MS. Be gentle with your body. Stay curious about your experiences and remind what happens beneath the surface matters too. Your body may be unpredictable. Your relationship with yourself can still become a place of steadiness. So let's begin having this conversation today.

#