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

    What Your MRI Isn’t Telling You About MS | Prof. Daniel Ontaneda
    2026/09/23
    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.
    ⏱️ CHAPTERS00:00 Welcome:
    02:33 What actually is an MS lesion?
    04:36 Understanding T2 lesions, contrast and “black holes”
    09:02 Do black holes predict more severe MS?
    10:28 Why can new lesions appear without symptoms?
    13:23 “My MRI is stable, but I don’t feel stable”
    18:14 The biology routine MRI can miss
    19:30 Chronic inflammation and changes beyond lesions
    22:35 New imaging markers: looking deeper into MS
    24:22 Paramagnetic rim lesions and chronic activity
    26:53 The central vein sign: identifying MS lesions
    30:29 Brain atrophy: what does it really mean?
    33:17 How hydration and time of day affect brain measurements
    35:46 Brain health, lifestyle and interpreting your report
    37:52 Monitoring MRI: rebaseline scans and contrast
    40:00 How often should you have an MRI?
    42:28 Personalising monitoring and spinal cord scans
    43:28 The future: 7T MRI and sharper spinal cord imaging
    47:00 What Daniel wishes everyone understood about MRI
    48:46 Bringing your scan and your experience together
    50:54 Closing thoughts: stay curious and ask questions🎙️ Hosted by Dr Agne Straukiene
    🎙️ Guest: Professor Daniel Ontaneda, Cleveland Clinic💬 Have you ever felt that your MRI report didn’t reflect how you were feeling? Share your experience or a question below.Subscribe to BeeWellwithMS for more conversations about MS science, care and everyday life.🌐 https://www.beewellwithms.comThis conversation is for general education. MRI findings and monitoring schedules need to be interpreted with your own clinical team, taking your individual circumstances into account.#MultipleSclerosis #MRI #BeeWellwithMS

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

    Assistive Technology for MS: Everyday Heroes, Wow-Tech & 7 Questions to Ask Before You Buy
    2026/08/23
    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.

    00:00 Assistive Tech Teaser
    01:22 Ground Rules and Labels
    03:03 Your Phone as Assistive Tech
    05:44 Mobility and Gait Support
    09:17 Hands and Work Setup
    10:43 Brain Fog and Fatigue Tools
    13:57 Heat and Bladder Planning
    15:50 Smart Home and Communication
    17:31 The Wow Shelf Tech
    21:37 Seven Questions Before Buying
    23:58 Wrap Up and Takeaways





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    27 分
  • Unpredictable MS Symptoms: Finding an Inner Anchor

    Unpredictable MS Symptoms: Finding an Inner Anchor
    2026/08/09
    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. A short guided practice invites noticing the body, approaching sensations with curiosity and kindness, choosing where attention goes, and asking, “What do you need from me today?”

    00:00 Welcome and the viral image
    01:20 The hidden reality of MS
    02:41 Mindfulness vs the struggle
    04:21 Settle in for a short practice
    07:25 Curiosity toward sensations
    08:30 Kindness and shifting attention
    10:05 Widen the lens beyond symptoms
    11:20 Ask what you need today
    13:03 Reflecting on fear vs curiosity
    14:28 Closing thanks and invitation


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

    Fampridine is NOW Available on the NHS in England | What People with MS Need to Know
    2026/08/05
    This is a landmark moment for people living with multiple sclerosis (MS) in England. After many years of campaigning, fampridine (prolonged-release 4-aminopyridine) is now routinely available on the NHS for eligible people with MS-related walking difficulties. In this video I explain: ✅ Why this NHS decision is so important
    ✅ How fampridine actually works inside damaged nerves
    ✅ Why only some people respond to treatment
    ✅ What to expect during the NHS 2–4 week treatment trial
    ✅ Who can and cannot take fampridine
    ✅ Common side effects and important safety information
    ✅ What happens if you stop taking it
    ✅ The latest research on real-world benefits beyond walking 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. Chapters 00:00 A long-awaited NHS change
    01:10 What is fampridine?
    02:25 How MS disrupts nerve signals
    04:15 How fampridine works
    06:05 Why some people respond—and others don't
    08:45 The latest real-world evidence
    10:40 NHS eligibility and treatment trial
    13:00 Safety, contraindications and side effects
    16:30 Taking fampridine correctly
    18:15 What happens if treatment stops?
    19:30 A realistic message of hope

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

    How MS Treatments Work: The Immune System “Train” Explained + Why Monitoring Matters
    2026/07/05
    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.

    00:00 MS Treatments Explained
    00:21 Stopping the Immune Train
    00:36 How Effective Are DMTs
    00:47 Progression Beyond Relapses
    00:58 New Targets and Monitoring
    01:14 Protecting the Brain Ahead
    01:30 Subscribe and Goodbye





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    This episode includes AI-generated content.
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    2 分
  • World MS Day: Letting Go of Guilt, Social Media Myths, and Practicing Self-Compassion

    World MS Day: Letting Go of Guilt, Social Media Myths, and Practicing Self-Compassion
    2026/05/30
    World MS Day: Letting Go of Guilt, Social Media Myths, and Practicing Self-Compassion

    On World MS Day, Dr. Agne Straukiene hosts BeeWellwithMS and speaks with Helena, host of the MS Trust podcast, about the often-invisible burden of guilt and self-blame in multiple sclerosis. They discuss how people with MS may blame stress, lifestyle, diet, or effort for relapses and new lesions despite not knowing what causes MS, and how social media “cures,” restrictive wellness trends, and misinformation can worsen anxiety and costs. Helena shares her experience of stable years followed by new lesions, how documenting patterns, running, and seasonal awareness helped her manage MS symptoms, and how CBT tools (like addressing catastrophizing and the “worry tree”) improved sleep and self-talk. They emphasize balancing evidence-based MS treatment and disease modifying treatment with quality of life, using community support wisely, and remembering that healthy MS diet and exercises support wellbeing but don’t prevent every relapse or smoldering MS change.

    00:00 World MS Day Intro
    00:55 The Hidden Burden Guilt
    01:47 Meet Helena and Set the Tone
    02:47 Diagnosis and Searching for Causes
    06:32 When New Lesions Trigger Blame
    11:31 Tracking Patterns and Running
    16:29 Lifestyle Helps Not Perfect Control
    19:29 Optimization Culture and Food Guilt
    21:27 Misinformation and Miracle Cures
    26:03 CBT Tools for Anxiety
    30:39 Community Connection and Reality Checks
    37:05 Final Message Compassion Over Blame


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    40 分
  • Mindful Park Walk- Nature’s Healing Moments

    Mindful Park Walk- Nature’s Healing Moments
    2026/03/14
    Dr Agne Straukiene films a mindful walk in Cockington Village park in Torquay, dedicating the video to people who struggle to get out due to mobility difficulties, such as wheelchair users without ramps. Agne invites viewers to spend a few minutes listening to birds, noticing spring, and appreciating nature’s beauty despite background sounds like toddlers. The walk includes stopping by a small cafe to enjoy water and ice cream while resting and regaining energy, reflecting on nature’s therapeutic power and the idea that life is beautiful but often overcomplicated. They point out a “princess tree,” observe bees working in the new season, share that pine trees are her favorite due to growing up by the Baltic Sea in Lithuania, and end with simple wellbeing tips: focus on breathing with two or three deep breaths and, if possible, go outside to explore nature.




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    6 分
  • But you look well- When MS Is Invisible

    But you look well- When MS Is Invisible
    2026/01/25
    In this episode of the BeewellwithMS Podcast, Dr. Agne Straukiene, a neurologist, discusses the concept of 'invisible illness' in Multiple Sclerosis (MS) with Amy Thompson, founder of the MS Together charity. Amy shares her daily struggles with symptoms like fatigue, pain, and brain fog, which are often invisible to others. They also explore the importance of communication, self-advocacy, and the need for empathetic understanding from society. The episode dives into the challenges of living with an invisible disability, the necessity of realistic goal-setting, and leveraging technology for support. Finally, the discussion highlights the value of creating safe, inclusive spaces for young people with MS to connect and share their experiences.

    00:00 Introduction to BeewellwithMS
    00:48 Understanding Invisible Symptoms
    04:42 Communicating Needs and Building Empathy
    11:04 Managing Ambitions and Productivity
    14:31 The Role of Technology and Flexible Goals
    17:12 MS Together: Creating Safe Spaces
    23:56 Final Thoughts and Reflections

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    29 分