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

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

BeewellwithMS discusses brain health and increased in prevalence neurological brain condition such as Multiple Sclerosis (MS) and how our brain works living with MS and what is the connection with our thinking, emotions, physical and general health.

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

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Unpredictable MS Symptoms: Finding an Inner Anchor

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.

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Fampridine is NOW Available on the NHS in England | What People with MS Need to Know

5 August, 2026 Easy Explained MS by Dr Agne Straukiene

Fampridine is NOW Available on the NHS in England | What People with MS Need to Know

Fampridine is not a disease-modifying treatment and it is not a cure for MS, but for some people it can make a meaningful difference to walking speed, confidence and day-to-day mobility. Because there is currently no test that predicts who will respond, the only way to know is through a carefully monitored treatment trial with your MS team. If you or someone you know has MS and walking has become more difficult, this video explains everything you need to know before discussing fampridine with your neurologist or MS nurse.

Show full transcription

Today brings exciting news for people living with multiple sclerosis. So the fampridine, which is a new drug, is available now under the England NHS system. Where before, people needed to pay privately, now is going to be available within the NHS. This is something that we've been waiting for many, many years and I know my colleagues who put an extra effort in getting this medicine available within their NHS, so thanks to them. But now, let's review why some people don't respond and some do, and whether there are some potential side effects, and are there any people that need to avoid this medicine? Tune in and watch that episode. Today brings important news for people living with multiple sclerosis in England. Fampridine, a medicine designed specifically to improve walking in some adults with MS, is now routinely available through the NHS for eligible patients. To understand fampridine, imagine a nerve fiber as an electrical cable. Myelin is the insulating layer around that cable. It helps a message travel rapidly and efficiently from one part of the nervous system to another. In MS, inflammation damages myelin and may also injure the nerve fiber itself. When insulation is stripped away, the electrical current can leak. The message may become slower, less reliable, or fail to reach its destination. Vampridine is sometimes described as a signal booster. Its technical name is a Potassium channel blocker. When a nerve fires, charged particles move across its membrane to create an electrical impulse. In a demyelinated segment, potassium channels that would normally be hidden beneath myelin become exposed. Potassium can leave the nerve too readily and the electrical signal loses strength. Famprudine blocks some of those potassium channels that helps the electrical charge remain within the damaged nerve for longer, increasing the chance that the impulse will continue across the demyelinated area and reach the muscles. Around thirty five to forty three percent of people respond to fampridine. Among those who do, walking speed improves by about twenty five percent on average. Because there is no test to predict who will respond, the NHS pathway uses a short two to four week trial to find out. Under the NHS England policy, Famprudine may be considered for adults with MS related walking impairment and an EDSS score between four and seven. Your MS team will check kidney function and seizure history before starting, as these are important safety checks. If the two to four week trial shows a clear benefit, treatment continues with regular review. If there is no benefit, it is stopped, and that is not a failure. Before starting fampridine, your MS team will review a number of the important contraindications. Fibridinib must not be used if you have a history of seizures, epilepsy, as it can lower the seizure threshold. It's also contraindicated in moderate or severe kidney impairments because the drug is cleared by the kidneys, and it reduced function raises the risk of toxic levels. Hypersensitivity to fampridine or any other of its ingredients is another aptamous contraindication. Your team will also consider including mild kidney impairments, older age, use of other medication that affects the seizure threshold, or one of the anti acids, simetidin, that is a contraindication because it lowers the clearing of pampridine. These checks are not as barriers to treatment they are just to make sure that pampridine is safe and appropriate to you. Pampridine has a narrow therapeutic margin. Higher blood levels increase neurological side effects and seizures risk, which is why dose and timing matter and why kidney function is checked. Possible side effects include urinary tract infection, insomnia, dizziness, headache, nausea, pins and needles sensation, tremors, weakness, bands, coordination. The prolonged release tablet is usually taking us ten milligrams twice a day, twelve hours apart, and without food. It must be swallowed the whole, not crushed, split, dissolved, or chewed. If a dose is missed, not a problem, it should not be doubled. Just restash it the earliest when you remember to take. Fambritin does not cause dependence, but because it's asymptomatic treatment, stopping it means that benefit stops too. Your previous walking difficulty may just return. This is not a new relapse. It's simply the drug's effect is wearing off. Always discuss any pile break with your MS team rather than stopping it independently. Fampridine will not repair MS damage, and many people will not respond. But for those who do, the change can be meaningful, getting around more easily, greater confidence outdoors, or more energy for everyday life. If walking is affected by your MS, speak with your MS team about whether fampradine could be be an option for you. You may ask me, so why don't all respond to this medicine? Fampridine does not work for everyone because MS affects each person's nervous system differently. The medicine helps electrical signals travel through nerve fibers that have lost their protective coating but are still able to carry messages. If those nerve pathways are too badly damaged, or if walking problem is mainly because of the muscle weakness, because of stiffness, balance, coordination, other MS symptoms, fampiridin may not make a noticeable difference. That's why we offer a trial of treatment, and then we assess whether it's providing you a meaningful difference and benefit for you. So fampridine is not a miracle drug. It doesn't repair anything. It just gives some speed and confidence that people could mobilize, feel better whilst they're in the community, in their own home, and maybe stabilize their gait and they could feel better about themselves. However, as you listened, there are some side effects and some issues that you need to be aware. If you're living with epilepsy, probably you should be cautious about getting one. But that's a hope and a promise for people who really struggle with their mobility. That's something to look forward to receive one day. Thanks for watching. You will do a favor for me if you are going to subscribe, if you're going to leave a comment. That just improves the engagement of this channel. Thanks for watching. Bye for now.

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How MS Treatments Work: The Immune System “Train” Explained + Why Monitoring Matters

5 July, 2026 Easy Explained MS by Dr Agne Straukiene

How MS Treatments Work: The Immune System “Train” Explained + Why Monitoring Matters

The episode explains MS treatments using a “train” analogy: immune cells travel toward the brain and spinal cord, and in multiple sclerosis some mistakenly attack myelin. Different therapies stop the process at different points by slowing new immune cell production, trapping cells in lymph nodes, blocking entry into the brain, or resetting parts of the immune system. It highlights that today’s treatments are highly effective at reducing relapses, preventing new MRI lesions, and slowing disability progression, but notes MS can still gradually progress even when relapses stop and scans look stable. The script emphasizes the need for new therapies targeting smouldering processes inside the brain and explains that regular blood monitoring helps ensure treatment remains safe, effective, and appropriate, encouraging viewers to subscribe to the Be Well with MS Podcast.

Show full transcription

If you ever looked at their mistreatment and wondered how they actually work, here's the simplest way to think about it. Imagine your immune system is a train carrying immune cells towards the brain and spinal cord. In multiple sclerosis, some of those immune cells mistakenly attack myelin, the protective coating around nerve fibers. Different MS treatments stop that train at different points along the journey. Some slow down the production of new immune cells. Some keep immune cells trapped inside lymph nodes. Some block them from crossing into the brain, and some reset parts of the immune system altogether. The good news? Today's MS treatments are incredibly effective at reducing relapses, preventing new MRI lesions, and slowing disability progression. But here's the important part. MS isn't just about visible inflammation. Scientists now know that some people can still experience gradual progression even when scans are stable and relapses have stopped. That's why new treatments are being developed to target the deeper smoldering processes happening inside the brain, and it's also why regular blood monitoring matters. These simple tests help your MS team make sure your treatment remains safe, effective, and the right choice for you. The story of MS treatment isn't finished. But if we compare twenty years ago, we come a long way. Marriage is power. Monitoring is protection. And together, they can help us protect the brain for the future. Don't forget to subscribe to Be Well with MS podcast. Bye.

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Behind the Mic

Behind the Mic

Behind the Mic

Show Host and Founder

Hi there! I’m Dr. Agne Straukiene, a neurologist, researcher, and MS specialist. As the host and founder of the #BeewellwithMS podcast, along with expert guests, I share knowledge to guide your MS journey. My commitment to MS care was recognised in 2022 with an International MS Brain Health Team award. I am a certified Brain Health Ambassador for the European Academy of Neurology (EAN).

I am co-creator of tools like the MS Infoflex database, MS Connect app, MS Patients Know Best, Augmented reality motor function assessment in MS (Strolll). I strive to simplify MS self-management.

By joining the BeewellwithMS community, you get access to exclusive advice, podcast updates, and you join our mission towards a healthier life with MS. Let’s take this journey together!

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Patients as Partners: Redefining the Future of MS Care and invitation to attend ECTRIMS 2025

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