RealTalk MS

If you've listened to this podcast before, you already know that we avoid hype, and we stick to talking about evidence-based science. So, let me say right up front -- today, the cause of multiple sclerosis is unknown. However, a research team has identified a bacterial toxin that may prove to be the cause of MS onset as well as MS relapses. Joining me for an exclusive conversation about this disco...

To tell or not to tell. When it comes to disclosing your MS to friends and family, that is the question. Choosing when to disclose and to whom to disclose is a deeply personal decision. Joining me to talk about some of the risks and benefits of disclosing your diagnosis is Dr. Victoria Leavitt, a clinical neuropsychologist, researcher, and assistant professor of neuropsychology at Columbia Univers...

If you're a regular listener, you've heard me say that the things that people affected by MS want the most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, functions of public policy. The people who decide whether we get these things are our elected officials at both the state and federal level. That's why advocacy should...

For many people, one of the most challenging aspects of living with MS is living with uncertainty. Living with unanswerable questions like, " Is today the day I experience a relapse? " " Will my disability worsen? " " Will I be able to continue working? " " Will I be able to take care of my family? "    These are all very real questions, and while there may not be answers for them today, there  ar...

When you visit the Oceans of Hope U.K. website, it reads, " Oceans of Hope is for people with MS, led by people with MS. " It goes on to say, " Our aim is to offer people from all over the world the opportunity to experience sailing as a way of learning new skills and restoring the self-confidence which can be stolen by MS. " The folks at Oceans of Hope U.K. can make that claim with high confidenc...

Last week in San Diego, the Americas Committee for Treatment and Research in Multiple Sclerosis convened their annual meeting, the ACTRIMS Forum. One of the highlights of this meeting is the presentation of the Barancik Prize, awarded in recognition of exceptional innovation in MS research. This year's winner of the Barancik Prize is Dr. Ruth Ann Marrie, a clinician scientist at the University of...

Two years ago, the National MS Society made a public commitment to do more to ensure that the MS movement was open to and reflective of everyone affected by MS. When you stop to consider issues like access to healthcare or MS clinical research, it quickly becomes apparent that diversity, equity, and inclusion aren't only organizational goals for the MS Society. They also address some of the system...

Between 3 and 5% of the people living with MS are diagnosed before their sixteenth birthday. In many respects, pediatric MS is just like MS in adults. But it carries with it a distinct set of what I call social complications that can feel even more challenging to navigate than MS itself. Just think back to the awkwardness of your pre-teen and teenage years. The pressures of school, friends, and da...

MS can sometimes feel isolating. And the ironic thing about those feelings of isolation is that you can experience them even when you're with other people. It's the feeling that, while everyone is being supportive, nobody really gets it . They've never experienced what it's like to actually live with MS. That's why connecting with others who are living with MS can be such a difference-maker. My gu...

Faith Bigam was diagnosed with MS in 2014, when she was 12 years old. She didn't know what MS was because, well, why would any 12-year-old kid know what MS is? But Faith quickly learned and just a year later, she had already become an Ambassador for the MS Society of Canada. The initial years of Faith's MS journey weren't easy, and I'm not sure how someone of any age who had less resilience might...

The CDC tells us that 36 million falls are reported each year, resulting in 3 million adults being transported to the emergency room and 32,000 adults dying from their falls. Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and more than 30% fall multiple times. Falling can cause broken bones, brain damage, and worse. That's why I'm d...

Today, we're talking about a topic that you've told me is the topic that you'd most like me to cover on this podcast -- autologous hematopoietic stem cell transplantation, or HSCT. And I'm dedicating this entire episode of RealTalk MS to a deep dive on the subject with the man who pioneered autologous HSCT as a treatment for relapsing-remitting MS, Dr. Richard Burt. We have a lot  to talk about! A...

Last week, in Episode 279 of RealTalk MS we talked with Professor Tanja Kuhlmann about a new framework for researching, diagnosing, and treating MS that was proposed by the International Advisory Committee on Clinical Trials in Multiple Sclerosis. This proposed framework represents the next evolutionary step in diagnosing and treating MS. Joining me this week to talk about how this proposed framew...

Every episode of RealTalk MS features updates and reports about emerging science. And, as you listen, some of you may wonder, ' When will these scientific achievements benefit me? When will these breakthroughs and advancements make their way from the laboratory workbench to the clinic? '   That's exactly what the panel of MS experts who comprise the International Advisory Committee on Clinical Tri...

When people ask me how I go about deciding who to interview for this podcast, my answer has always been the same. I look for difference-makers. People whose efforts are making a real difference in the MS community. They might be a researcher, clinician, rehabilitation specialist, MS Navigator, fundraiser...it's a long list. A difference-maker might also be someone who motivates and inspires all of...

For me, the holiday season is a time for joy, celebration, and reflection. And when I reflect upon the advances in MS research that we've seen in the past year, it's hard not to feel encouraged. 2022 will be remembered as the year when the National MS Society published the Pathways to Cures research roadmap, a bold initiative focused on stopping MS progression, restoring lost function, and ending...

This special episode of RealTalk MS is sponsored by EMD Serono and  MS in the 21st Century . In this special episode of RealTalk MS, I'm joined by Professor Peter Rieckmann, Stanca Potra, and Maria Paz Giambastiani. We're taking a look back at the advances that have been made in treating MS and focusing our eyes ahead to determine the work that still needs to be done.  Professor Rieckmann is the C...

Some of you might remember that at the end of October, I was in Amsterdam, attending the 2022 ECTRIMS Congress. ECTRIMS is an acronym for the European Committee for Treatment and Research in Multiple Sclerosis, and their annual scientific congress is the largest MS research conference in the world. As the conference ended, I sat on some steps outside the conference center alongside the National MS...

The first step in living well with MS is establishing a treatment plan with your neurologist or MS specialist. And a disease-modifying therapy, or DMT, should be the foundation of that plan. Joining me to talk about what disease-modifying therapies can and can't do, and how to work with your doctor to find the best MS medication for you is the Clinical Pharmacy Specialist in Multiple Sclerosis and...

This special episode of RealTalk MS is sponsored by EMD Serono and  MS in the 21st Century . In this special episode of RealTalk MS, we're talking with Professor Dawn Langdon and David Yeandle about the impact of MS-related cognitive issues on employment.  Professor Langdon is a Professor of Neuropsychology with a special interest in cognition at the Royal Holloway University of London, in the Uni...

A quick scan of the news on any given day should remind all of us that natural disasters can strike anywhere at any time. Whether it's massive snowstorms, earthquakes, wildfires, hurricanes or floods, no one is immune when Mother Nature chooses to act up. That's why being prepared for a natural disaster is important for everyone. And if you're living with MS, it's especially important for you to h...

Spasticity is one of the most common symptoms of MS, impacting up to 80% of the people living with MS. It can feel like mild muscle tightness that you wish would just go away or it can be so painful and debilitating that it keeps you from moving. Dr. Michelle Cameron joins me in this episode to discuss what spasticity is and how to best manage it. Dr. Cameron is a neurologist and physical therapis...

This week's episode of RealTalk MS was recorded in front of a LIVE audience at the National MS Society's 2022 Leadership Conference.  Joining me in this special episode are Lori Turley, who was diagnosed with MS in 2021, and whose commitment to fundraising and advocacy is already producing dividends, and Dr. Bradley Zuchero, an MS Society-funded research fellow whose lab has discovered the biologi...

When we talk about managing MS on this podcast, we're usually talking about treatments based upon traditional Western medicine. But there are also complementary therapies that have been shown to improve MS symptoms. And acupuncture is one of those complementary therapies that's been shown to be effective in treating pain, spasticity, numbness or tingling, bladder problems, and depression.  Joining...

Last week, over 7,000 MS researchers and clinicians from more than 100 countries traveled to Amsterdam to attend the 2022 ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) Congress, the largest MS research conference in the world. As has become an annual ECTRIMS tradition on RealTalk MS, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and...