MS Living Well: Key Info from Multiple Sclerosis Experts

Facing the first symptoms and a new multiple sclerosis diagnosis can be terrifying, leaving you with a flood of questions about your future. How do you navigate your career, relationships, and whether to start a family? The uncertainty can be overwhelming, but you don’t have to go it alone. Support from loved ones and connections with others living with MS can help light the way.

As MS progresses, the mental challenges often intensify. The battle to accept mobility aids—devices that many resist—can feel like a loss, but in reality, they can expand your world. In this episode, we dive deep into the mental strategies to better cope with MS. Two inspiring advocates living with MS describe embracing change, turning their struggles into stories of strength, adaptability and hope.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Ardra Shephard, writer, podcaster and television host based in Toronto, Canada

Tyler Campbell, professional inspirational speaker and former college football player from Austin, Texas

In this era of highly effective treatments, early intervention for multiple sclerosis can be life changing. However, the wide range of initial symptoms often leads to many people being undiagnosed or misdiagnosed, leaving them without the proper care for years. In this podcast episode, we'll discuss the early signs of MS and the key tests, such as specific MRI and spinal fluid results, that are crucial for a timely and accurate diagnosis.

Criteria to diagnose MS continues to evolve to help make a diagnosis more swiftly and correctly. Specific MRI findings in the brain and spinal cord can allow for an immediate diagnosis of MS with the first attack. Brand-new updates highlight the role of the optic nerve and even offer a path to diagnosing MS in people who show no neurological symptoms. With so much at stake, a timely and accurate diagnosis of MS is more important than ever.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Xavier Montalban MD PhD, Chair of Neurology, Director of CEMCAT (Multiple Sclerosis Center of Catalonia) at Vall d’Hebron University Hospital, Barcelona, Spain  

Léorah Freeman MD PhD, Assistant Professor, Dell Medical School Department of Neurology, UT Health Austin Multiple Sclerosis and Neuroimmunology Center 

The spinal cord serves as the main communication highway between the brain and body. Did you know that 80% of people with multiple sclerosis have spinal cord lesions on MRI? These lesions can disrupt specific neural pathways, leading to common MS symptoms like numbness, weakness, impaired coordination, balance issues, bladder problems, constipation, and sexual dysfunction. For instance, damage to the corticospinal tract on one side of the spinal cord can weaken an arm or leg.

A remarkable autopsy study revealed that nearly 90% of people with MS still had active inflammation in the spinal cord. This finding brings new hope for potential treatments, even for older and progressive MS patients. Advances in imaging technology, including more powerful MRI scanners (3 Tesla and higher), are enhancing our ability to see inside the spinal cord, which is as thin as a pinky finger. Improved spinal cord imaging is driving the development of new therapies in clinical trials and helping identify those at risk for worsening disability, ultimately guiding better treatment decisions.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Gabriele De Luca MD DPhil, Professor of Clinical Neurology and Experimental Neuropathology, University of Oxford, United Kingdom

Bruce Cree MD PhD, Professor of Neurology at University of California, San Francisco School of Medicine

Awareness of the more uncommon multiple sclerosis symptoms can lead to an earlier diagnosis and appropriate treatment. For instance, experiencing electrical shock sensations when bending the neck forward, known as Lhermitte’s sign, may indicate an attack on the cervical spinal cord. Likewise, excruciating bolts of pain across either side of the face, called trigeminal neuralgia, can be caused by a MS relapse. The MS hug, an unfriendly, squeezing sensation around the torso, can respond to muscle relaxants and nerve pain medications. Some MS symptoms, like tingling in legs, only surface when exercising or overheated (Uhthoff’s phenomenon).

Vertigo, a spinning sensation, can be a sign of MS, especially when lasting days and accompanied by other symptoms like gait imbalance, facial numbness and double vision. Brainstem attacks may also lead to swallowing issues and shaky vision. While MS bladder issues are commonly addressed,  bowel problems, including constipation, urgency, incontinence and trouble evacuating, should not be overlooked. Overcoming stigma is essential to treat sexual dysfunction.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Mary Ann Picone MD, Medical Director, MS Center at Holy Name Medical Center, Teaneck, New Jersey

Bruce Hughes MD, Director of the Ruan Multiple Sclerosis Center, MercyOne, Des Moines, Iowa

Prepare to be intrigued by the groundbreaking intersection of artificial intelligence (AI) and multiple sclerosis care! By combing through extensive databases, including genetic information and real patient records, AI can forecast with remarkable accuracy the likelihood of MS onset. In the near future, AI could even serve as a guiding light for clinicians and MS patients in selecting the most suitable disease-modifying therapies, armed with predictive algorithms tailored for each individual.

But the marvels of AI don’t stop there. In a recent study, AI detected an astonishing 93% of new and enlarging T2 brain lesions in MRI scans, far surpassing the 58% accuracy rate of routine radiology reads. Artificial intelligence is also making waves in drug development and early clinical trial design, accelerating the quest for innovative therapies to combat MS.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Tal Arbel PhD, Professor, Department of Electrical and Computer Engineering, McGill University, Montreal

Michael Barnett MBBS (Hons) FRACP PhD, Professor in Neurology, University of Sydney and Director of the MS Society Clinic & MS Clinical Trials Unit at the Brain and Mind Centre

Living with multiple sclerosis isn't just about managing the condition itself, but often involves navigating a myriad of additional health concerns known as comorbidities. Individuals with MS face a higher risk of experiencing new relapses when dealing with comorbidities like high cholesterol or depression. Furthermore, autoimmune diseases such as psoriasis and inflammatory bowel diseases like Crohn’s disease and ulcerative colitis are more prevalent among those with MS. There is even a heightened risk of bladder cancer.

Interaction of MS treatments and other common conditions like high blood pressure (hypertension), high cholesterol and diabetes are addressed. Experts share how immunotherapies used for other autoimmune diseases may benefit or actually worsen MS disease activity. Crucial information is shared on cancer treatment concerns in individuals with MS. Adopting healthy lifestyle behaviors is essential to minimize the development of these comorbidities.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Ruth Ann Marrie MD PhD, Professor of Medicine and Community Health Sciences at University of Manitoba, Canada

Mark Cascione, MS neurologist, South Tampa MS Center, USA.

Sex hormones, such as estrogens and testosterone, affect each individual's journey living with multiple sclerosis. While both genders face equal MS risk before puberty and after menopause, women experience up to three times higher risk during their reproductive years. Pregnancy generally brings less relapses, potentially attributed to high estriol levels. However, navigating treatment decisions well while trying to conceive and after delivery requires finesse and expertise. Equip yourself with the latest women's health info regarding MS, covering topics from birth control and fertility treatments to menopause and osteoporosis.

Testosterone has important anti-inflammatory and neuroprotective benefits in multiple sclerosis.  Nevertheless, men are at higher risk for disability progression then women. Declining testosterone levels over time (called andropause) and Y chromosome genes may tilt the scales towards disability. Listen to current testosterone research including potential remyelination benefits.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Maria Houtchens MD, founding director of the Women’s Health Program at the Brigham MS Center and Associate Professor of Harvard Medical School in Boston, USA

Jorge Correale MD, Head of Neuroimmunology and Demyelinating Diseases at the Dr. Raúl Carrea Institute of Neurological Research in Buenos Aires, Argentina

In a paradigm-shifting discovery, researchers uncovered that B cells, not T cells, wield significant influence on orchestrating neurological damage in MS. Join UCSF Professor Dr. Stephen Hauser as he shares the remarkable odyssey from hurdles to triumphs of developing B cell monoclonal antibody treatment for multiple sclerosis.  Disease impact, safety concerns and personalization of MS treatment of these medications including Ocrevus (ocrelizumab), Kesimpta (ofatumumab) and Briumvi (ublituximab) are highlighted. 

Brain-penetrant BTK inhibitor therapies that may offer more direct targeting of B cells within the central nervous system, potentially unlocking new possibilities in treating progressive forms of MS. Professor Heinz Wiendl explores the connection between Epstein-Barr virus infection of B cells and the initiation and progression of MS including trials investigating strategies to target EBV-infected B cells. Pioneering approaches like CAR-T therapy and brain shuttle techniques provide optimism for the next generation of MS treatment.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews: 

Stephen Hauser MD, Professor of Neurology at the University of California, San Francisco (UCSF) and Director of the UCSF Weill Institute for Neurosciences

Heinz Wiendl MD, Professor of Neurology and Chair of the Department of Neurology at the University Hospital of Muenster in Germany

Christine Ha, an award-winning blind chef and restauranteur, shares her experience grappling with neuromyelitis optica spectrum disorder (NMOSD). Facing relapses with the inability to walk and feed herself that challenged her independence, she leaned on the support from family and friends. As she lost her sight due to optic neuritis in both eyes, Ms. Ha had to embark on a journey of rediscovery in the kitchen, starting with the fundamentals. Winning MasterChef Season 3 marked a turning point, propelling her culinary career forward despite the obstacles posed by her disability. 

NMOSD is an autoimmune disease in which an antibody attacks water channels on astrocyte cells in the optic nerves, spinal cord and sometimes the brain. Attacks or relapses can be devastating and incomplete recovery from attacks is typical. Like Ms. Ha, some people living with the condition can be misdiagnosed with multiple sclerosis. A blood test for the aquaporin-4 antibody is key to getting diagnosed correctly early. Since 2019, highly effective treatment options have been FDA-approved that reduce relapses by 77-94%.

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Christine Ha, "The Blind Cook".  Her first cookbook, Recipes from My Home Kitchen, was a New York Times best-seller. Ms. Ha’s first restaurant in Houston, The Blind Goat, was named a semi-finalist for 2020 Best New Restaurant in America by the James Beard Foundation. She was also named a James Beard finalist for Best Chef in Texas in 2022.

Michael Levy MD PhD, Associate Professor at Harvard Medical School and Director of the Neuroimmunology Clinic and Research Laboratory

Wherever you are on your multiple sclerosis journey, there are many reasons to be optimistic about the future of mobility. Our experts, both holding doctorates in physical therapy, offer invaluable guidance on enhancing your walking abilities through targeted exercise and specialized therapy. Learn how to reduce the risk of falls, alleviate spasticity, and build endurance for a more active life.

Cutting-edge technology, from wearable electrical stimulation devices to incredible exoskeletons, are revolutionizing mobility for those living with MS. Discover how neuromodulation, in conjunction with physical therapy, can pave the way for new neural pathways. Virtual reality and anti-gravity treadmills are redefining therapy options for those people with advanced MS. Moreover, gain insights into conquering travel challenges, empowering individuals living with multiple sclerosis to venture out into the world.

Barry Singer MD, Director of The MS Innovations in Care, interviews Gretchen Hawley DPT, The MSing Link and Annie Morrow DPT, Director of the Stephen A. Orthwein Center.