Episode 62: New Guidelines for Managing MS Cognitive Dysfunction with Dr. John DeLuca

Vision impairment is a key symptom of multiple sclerosis. In fact, many people experience optic neuritis as the very first sign of MS. People living with MS may also experience other vision-related issues including internuclear ophthalmoplegia, diplopia, nystagmus, oscillopsia, and reading fatigue. 

Dr. Shiv Saidha joins me as we take a deep dive into strategies for navigating MS-related vision issues while managing and optimizing your vision. Dr. Saidha is a professor of neurology in the Division of Neuroimmunology and Neurological Infections at Johns Hopkins Medicine.

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: We're taking a deep dive into managing MS-related vision issues  :22

Doctor Shiv Saidha discusses how to best manage MS-related vision issues  1:17

Share this episode  29:44

Have you downloaded the free RealTalk MS app?  30:05

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Just copy this link & paste it into your text or email: https://realtalkms.com/341

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 341
Guest: Dr. Shiv Saidha

When people living with MS think about rehabilitation, they often think of physical therapy. And, while physical therapy is an important part of MS rehabilitation, our conversation today goes far beyond physical therapy.

Doctors Deborah Backus and Brad Willingham, from the Shepherd Center, join me as we take a deep dive into next-level potentially life-changing rehabilitation tools for people living with MS.

Dr. Backus is the Vice-President of Research and Innovation at the Shepherd Center. She's a researcher, physical therapist, and educator with more than 30 years of experience in the neurorehabilitation field.

Dr. Willingham is the Director of MS Research at the Shepherd Center. Dr. Willingham's work focuses on the development of innovative technologies and strategies to advance neurorehabilitation.

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: We're taking a deep dive into next-generation tools for MS rehabilitation  :22

Doctors Deborah Backus and Brad Willingham discuss innovations in MS rehabilitation   1:44

Share this episode  29:48

Have you downloaded the free RealTalk MS app?  30:08

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/340

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 340
Guest: Dr. Deborah Backus and Dr. Brad Willingham

A couple of terms have found their way into the MS lexicon and they have left some people living with MS feeling confused and even frightened. If you've been diagnosed with relapsing-remitting MS and you've always assumed that disease progression only occurs at the time of a relapse, you may be wondering what progression independent of relapse activity, or PIRA, means and how it may or may not impact your MS journey.

And if you are someone whose MS seems relatively stable and well-managed, you may be wondering whether your central nervous system is under some sort of silent attack from smoldering MS. 

Professor Alan Thompson joins me this week to shine a bright light on what, for many, are anxiety-inducing terms and help us understand what they are actually attempting to describe. Professor Thompson is the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS.

We're also sharing results of a study that suggests that kids and teens who are living with MS may experience better outcomes if they are started on a high-efficacy disease-modifying therapy.

We'll tell you about a study that adds to the evidence that autologous hematopoietic stem cell transplantation may be a highly effective treatment that allows some people living with MS to live symptom-free and even return to the workforce.

We're sharing the details of an AI tool that can predict an individual's disease course, while we're talking about survey results that show some strong push-back from the patient community when it comes to using artificial intelligence in the diagnostic process.

And we'll tell you about a study that shows that caffeine may improve balance, mobility, and even quality of life for people living with MS.

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: What is "Progression Independent of Relapse Activity"?  1:31

STUDY: High-efficacy disease-modifying therapies are shown to be effective in treating pediatric onset MS  3:02

STUDY: Compelling evidence for autologous hematopoietic stem cell transplantation (HSCT) as an effective treatment for MS  6:49

An AI tool has been developed that can predict an individual's MS disease course  9:17

SURVEY: Some people have mixed feelings about using AI in diagnosing illness  11:47

STUDY: Caffeine is shown to improve balance and mobility in people with MS  14:38

Professor Alan Thompson helps define a couple of terms that people with MS may find confusing and even worrisome   16:47

Share this episode  28:15

Have you downloaded the free RealTalk MS app?  28:35

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/339

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis
https://jamanetwork.com/journals/jamaneurology/fullarticle/2814784

STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway 
https://journals.sagepub.com/doi/10.1177/13524585241231665

STUDY: Predicting Disease Severity in Multiple Sclerosis Using Multimodal Data and Machine Learning
https://link.springer.com/article/10.1007/s00415-023-12132-z

SURVEY: Consumer Perceptions of Second Opinions and Concierge Health Services
https://clinicbyclevelandclinic.com/consumer-perceptions-report

STUDY: Potential Efficacy of Caffeine Ingestion on Balance and Mobility in Patients with Multiple Sclerosis: Preliminary Evidence from a Single-Arm Pilot Clinical Trial
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0297235

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 339
Guest: Professor Alan Thompson

You've probably heard me say more than once that the things people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials. That's why advocacy is so critically important.

The National MS Society's Public Policy Conference gets underway on March 4th, and joining me with a preview of this year's conference is the MS Society's Vice-President of Advocacy, Steffany Stern.

We're also taking a deep dive into a paper just published by a group of MS experts detailing the current status of progressive MS research, identifying lessons learned along the way, and calling out the remaining challenges to better understanding MS progression. 

We're sharing the details of how and where to register for this week's global webcast being hosted by the International Progressive MS Alliance.

And I'm remembering my wife, Jeanne, on the fourth anniversary of her passing.

We have a lot to talk about! Are you ready for RealTalk MS??!

Jeanne's Story  :22

This Week: Inside MS advocacy and this year's Public Policy Conference  8:36

Experts publish an update on progressive MS research, identify lessons learned, and call out the  remaining challenges  9:35

The International Progressive MS Alliance hosts a global webcast this Thursday  17:22

MS Society's Vice-President of Advocacy, Steffany Stern, gives us a peek at this year's Public Policy Conference   18:54

Share this episode  31:51

Have you downloaded the free RealTalk MS app?  32:10

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/338

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

National MS Society: Become an MS Activist
https://nationalmssociety.org/advocacy

PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00027-9/abstract

RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee 
https://realtalkms.com/280

RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis
https://realtalkms.com/193

WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research
https://www.msif.org/treatments-webcast/

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 338
Guest: Steffany Stern

We're all living longer and that includes people living with MS. And as they age, people with MS are asking new questions.

Is there a need to stay on disease-modifying therapy after the age of 60? 
How do we know whether a new symptom is a symptom of MS or a symptom of aging?
Does an additional age-related health condition make treating MS more difficult?
Does treating MS make treating that new health condition more difficult?
How can we best offset the social isolation that's often associated with MS and with aging?

This week, Dr. Aaron Boster joins me on a deep dive into aging with MS. Dr. Boster brings 19 years of experience as an MS clinician. He's participated in over 65 clinical trials. And, following its FDA approval, Dr. Boster administered the very first dose of Ocrevus in the world. Dr. Boster is well known throughout the MS community for the countless number of short videos and live Q&A sessions he regularly hosts and posts on YouTube.

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: Aging with MS :22

Dr. Aaron Boster tackles the multifaceted subject of aging with MS  1:59

Share this episode  38:09

Have you downloaded the free RealTalk MS app?  38:32

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/337

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 337
Guest: Dr. Aaron Boster

When people living with MS find themselves unable to continue working due to disability, they turn to Social Security Disability Insurance (SSDI). And when they do, many are surprised to find the long, winding, sometimes confusing road that lies ahead. 

This week, disability law expert Jamie Hall joins me to demystify the process of applying for SSDI benefits. Jamie specializes in social security and long-term disability law. And he, literally, wrote the book for the National MS Society on applying for SSDI benefits.

We'll also tell you about the amazing work this year's recipient of the Barancik Prize for Innovation in MS Research is involved in.

We're reporting on the progress that scientists are making in penetrating the blood brain barrier (And we'll remind you about why that makes a real difference for everyone living with MS!)

We're sharing the details about KYV-101, the experimental CAR-T cell therapy that's been given a Fast Track designation by the FDA.

We'll tell you about study results that show people with a university education are more likely to be on a disease-modifying therapy.

And we're sharing study results that identify the inequity in geographic proximity to MS care in the United States.

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: How to apply for Social Security Disability Insurance benefits  :22

This year's recipient of the Barancik Prize for Innovation in MS research  1:58

Real progress reported in efforts to penetrate the blood brain barrier  7:17

FDA gives Fast-Track designation to CAR-T cell therapy for MS  10:03

STUDY: Having a university education makes it more likely that someone with MS will be on a DMT  13:04

STUDY: Geographic proximity to MS care in the U.S. is far from equal   15:04

Disability law expert Jamie Hall discusses how to apply for SSDI benefits   19:29

Share this episode  38:01

Have you downloaded the free RealTalk MS app?  38:21

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/336

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers
https://nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Social-Security-Disability-for-People-with-MS.pdf

Predictive High-Throughput Platform for Dual Screening of mRNA Lipid Nanoparticle Blood Brain Barrier Transfection and Crossing
https://pubs.acs.org/doi/10.1021/acs.nanolett.3c03509

STUDY: University Education Facilitates Uptake of Disease-Modifying Therapies for Multiple Sclerosis: A Community-Based Study Using the UK MS Register
https://journals.sagepub.com/doi/10.1177/13524585231221411

STUDY: Geographic Proximity in Access to Neurologists and Multiple Sclerosis Care in the United States
https://www.neurology.org/doi/10.1212/WNL.0000000000207916

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 336
Guest: Jamie Hall, Esq.

This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada.

In this special episode of RealTalk MS, Professor Alice Laroni and Rachel Horne join me to explore  what happens at the time someone receives their MS diagnosis, What the conversation with their neurologist is like, what kind of information they receive, and where they might turn to learn more about their diagnosis. 

We're also exploring what should be happening at the time of diagnosis and what needs to come next.

Professor Alice Laroni is a neurologist with over 19 years of experience providing clinical care to MS patients and more than 14 years of experience in neuroimmunological research. She is also an Assistant Professor of Neurology at the University of Genova, in Italy.

Rachel Horne is a professional journalist with a focus on medical issues, as well as someone who's living with MS, herself. Rachel is a regular contributor to The MS Blog, and has also contributed to articles published in science journals including The BMJ, Annals of Neurology, and Neurology.

Both Professor Laroni and Ms. Horne are active members of the MS in the 21st Century initiative. MS21 is a Merck, KGaA, Darmstadt, Germany, initiaitve involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.

How, and to whom, should you disclose your MS at your job? And if you decide to disclose, is that information confidential? What does reasonable accommodation mean? If you need a day or two to bounce back after an infusion, is that part of your PTO? And what do you do when you no longer have days off available? If you're living with MS and you're employed, you absolutely need to know and understand your rights in the workplace. 

MS Navigator Christina Forster joins me to answer these questions and more as she shines a bright light on your rights in the workplace.

I'll also remind you why I consider the MS Navigator program to be the gold standard when it comes to customized, one-on-one problem solving and support for anyone affected by MS. (And did I mention there's no charge???)

I hear your questions, so we're taking a moment to review what the RealTalk MS show notes are all about, and where to find them.

We're sharing study results that show a wheat-free diet may reduce MS severity (and it's not about the gluten!)

We'll tell you about a call by experts to adopt a new framework for describing Parkinson's Disease (and we'll explain why that's relevant to the MS community)

Scientists have identified 4 variant genes that place an individual taking some common MS disease-modifying therapies at higher risk of contracting PML. There's a test for that, and we'll tell you how to have that genetic testing done at no cost.

We're talking about research that uncovered new details about how cells in the central nervous system communicate with the cells that produce myelin. And we'll tell you why zebrafish are the key to this research.

And we're sharing a change in strategy for treating MS contained in the updated guidelines published by the Spanish Society of Neurology 

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: Successfully navigating the health insurance maze  :22

Why the MS Navigators are the gold standard when it comes to support for people affected by MS  :56

Everything you need to know about the RealTalk MS show notes  2:12

STUDY: A wheat-free diet may reduce MS severity  5:28

Experts call for a new framework for describing Parkinson's Disease  8:31

A test to determine who is at high risk for contracting PML is available...at no cost  11:36

STUDY: Researchers identify specific proteins and signals involved in myelin formation in zebrafish  14:08

The Spanish Society of Neurology has updated its guidelines for treating MS  15:42

MS Navigator Christina Forster discusses your rights in the workplace   19:35

Share this episode  30:37

Have you downloaded the free RealTalk MS app?  30:57

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/335

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Contact an MS Navigator
Phone: 1-800-344-4867
Web via chat: https://nationalmssociety.org
Email: contactusnmss@nmss.org

STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study 
https://journals.sagepub.com/doi/10.1177/17562864231170928

Progressive Multifocal Leukoencephalopathy Genetic Risk Variants for Pharmacovigilance of Immunosuppressive Therapies
https://www.researchgate.net/publication/371965313_OPEN_ACCESS_EDITED_BY_Progressive_multifocal_leukoencephalopathy_genetic_risk_variants_for_pharmacovigilance_of_immunosuppressive_therapies

No Cost PML Risk Genetic Test
https://pmlrisktest.org

STUDY: Synaptic Input and Ca2+ Activity in Zebrafish Oligdodendrocyte Precursor Cells Contribute to Myelin Sheath Formation
https://www.nature.com/articles/s41593-023-01553-8

Consensus Statement of the Spanish Society of Neurology on the Treatment of Multiple Sclerosis and Holistic Patient Management in 2023
https://www.sciencedirect.com/science/article/pii/S2173580824000191

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 335
Guest: Christina Forster

Living well with MS means learning to plan ahead. And, while planning ahead may not solve every issue that crosses your path, taking time to understand some of the details and making the right choices when it comes to your health insurance can make a huge difference in your MS care and treatment.

MS Navigator and insurance resources specialist Carla Turechek joins me to share strategies for successfully navigating the health insurance maze with a minimum number of "surprises."

We're also sharing study results that can help you get the most benefit from your everyday physical activity.

We'll introduce you to an early-stage biotech company that just secured funding to develop three novel therapies that will address myelin repair and neuroinflammation.

We'll share study results that show that a high level of a protein in the blood is a reliable predictor of future disability progression among people living with progressive MS.

We're sharing some eye-opening discount prices from the Mark Cuban Cost Plus Drug Company for generics for three different disease-modifying therapies.

And, speaking of generics, we'll explain why you can buy the generic for Tecfidera in the United States today, but it won't be available in Europe until next year, at the earliest.

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: Successfully navigating the health insurance maze  :22

STUDY: The benefit of physical activity lies in step rate and not step count  1:42

Myrobalan Therapeutics secures financing to develop 3 therapies that address myelin repair and neuroinflammation  3:47

STUDY: High levels of a protein in the blood may predict disability progression in people with primary progressive MS  5:41

You'll want to check out the prices of generics for 3 disease-modifying therapies at Mark Cuban's Cost Plus Drug Company  8:50

Generics for Tecfidera have been delayed at least one year in Europe  10:47

MS Navigator and insurance resources specialist Carla Turechek shares strategies for maximizing your health insurance benefits and minimizing your costs   12:03

Share this episode  26:46

Have you downloaded the free RealTalk MS app?  27:07

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/334

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

STUDY: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume
https://pubmed.ncbi.nlm.nih.gov/38214757

Myrobalan Therapeutics 
https://myrotx.com

STUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis 
https://onlinelibrary.wiley.com/doi/10.1002/acn3.51969

The Mark Cuban Cost Plus Drug Company
https://costplusdrugs.com

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 334
Guest: Carla Turechek

You've just had your appointment with your neurologist or MS Specialist and you're on your way home, feeling like you weren't heard. Maybe there wasn't sufficient time. Or it might feel like your opinion simply isn't valued. Your frustration could even be the result of language issues and cultural barriers that make communication difficult. Whatever the reason, it doesn't have to be this way.

Dr. Luis Manrique-Trujillo joins me this week to share tips and strategies that will improve the quality of communication between you and every member of your MS care team. Dr. Manrique-Trujillo is a neurologist specializing in neuroimmunology and multiple sclerosis at MedStar Georgetown University Hospital in Washington, D.C.

We're also sharing some fascinating research that traces the gene variants that increase someone's risk of developing MS all the way back to the Bronze Age.

We'll tell you about a small study that may explain how the Epstein-Barr Virus triggers MS.

We'll tell you about a class-action lawsuit that accuses Pharmacy Benefit Managers of illegal collusion and price-fixing. (And we'll explain why this lawsuit could be a huge step toward lowering the cost of your prescription medications)

And we're sharing our plans for RealTalk MS in 2024.

We have a lot to talk about! Are you ready for RealTalk MS??!

My New Year's Resolutions for RealTalk MS  :22

This Week: Improving communication between you and your neurologist  4:59

STUDY: Ancient DNA reveals how MS risk genes arose and spread across Europe  5:59

STUDY: EBV-specific T-cells may play a key role in developing MS  9:36

An important class-action lawsuit has been filed against Pharmacy Benefit Mangers  11:18

Dr. Luis Manrique-Trujillo shares strategies for improving communication between you and your neurologist   15:41

Share this episode  34:19

Have you downloaded the free RealTalk MS app?  34:40

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/333

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

STUDY: Elevated Genetic Risk for Multiple Sclerosis Emerged in Steppe Pastoralist Populations
https://www.nature.com/articles/s41586-023-06618-z

STUDY: Expanded T Lymphocytes in the Cerebrospinal Fluid of Multiple Sclerosis Patients are Specific for Epstein-Barr-Virus-Infected B Cells
https://pnas.org/doi/abs/10.1073/pnas.2315857121

Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 333
Guest: Dr. Luis Manrique-Trujillo