“Ask the Expert” and “ABCs of NMOSD” Podcast Update!
SRNA has two series of podcasts! For our Ask the Expert podcast series, we invite experts to share the latest knowledge and answer our community’s questions. Podcast topics include how to avoid misdiagnosis and the immunology of disease, with over 4,100 listens so far this year. Our 2022 Ask the Expert podcast series is sponsored in part by Horizon Therapeutics, Alexion – AstraZeneca Rare Disease, and Genentech. SRNA also hosts the ABCs of NMOSD podcast series, in collaboration with The Sumaira Foundation and The Guthy-Jackson Charitable Foundation.This series is made possible through a patient education grant from Horizon Therapeutics. For this series, we bring together the latest information and research about all things NMOSD, from diagnosis and treatment to quality of life and what it’s like to live with NMOSD. See below for our podcasts summaries to find out which you might want to explore!
Ask the Expert
1. Avoiding a Misdiagnosis: Understanding the Differences Between MOGAD, MS, and NMOSD
Dr. Geoffrey Eubank provided an overview of MOG antibody disease, multiple sclerosis, and neuromyelitis optica spectrum disorder, including the similarities and differences between the disorders. They explained how each of the diagnoses are made, the potential consequences of misdiagnosis, and why a diagnosis might change over time. Finally, the experts discussed current research being conducted and what may be expected in the future for diagnosing these disorders. Listen here.
2. Study of Transverse Myelitis in Veterans Health Administration Records
Drs. Jonathan Galli, Michael Sweeney, and Justin Abbatemarco began by explaining the purpose of their research on transverse myelitis. They also talked about methods they used to conduct this research and the inclusion and exclusion criteria. The major findings are described, as well as how these compare to previous studies. Finally, the experts discussed what this means for those with TM, the future of diagnosing and treating TM, and how physicians and medical experts can be educated regarding these issues. Listen here.
3. The Future of Diagnosing Transverse Myelitis
Drs. Kyle Blackburn, Stacey Clardy, Eoin P. Flanagan, Benjamin Greenberg, Michael Levy, and Carlos Pardo-Villamizar. Dr. Carlos Pardo-Villamizar began by explaining the history of transverse myelitis. The experts then talked about criteria for TM published in 2002 and how the diagnostic process has changed in the past 20 years. They discussed the terminology of TM, how vascular causes of myelopathies change our understanding of diagnosing TM, and changes they foresee to the TM diagnostic criteria and process. Finally, they answered questions from the audience about potential research for treatments or a cure and COVID-19 vaccines. Listen here.
4. Managing Spasticity with a Baclofen Pump
Dr. Miguel Escalón began by giving an overview of spasticity, tone, and treatment options. He explained how the baclofen pump works, its advantages, and the impact on neurogenic bladder and bowel function. Next, Dr. Escalón described the initial surgical procedure, recovery process, and potential risks. Finally, he discussed long-term operation and maintenance, as well as safety measures and how pregnancy might impact the baclofen pump. Listen here.
5. Community Spotlight | Paul Garrett
The Community Spotlight edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, a Peer Connect volunteer, Paul Garrett, joined Lydia Dubose of SRNA to talk about his experience with transverse myelitis (TM). They discussed his initial symptoms and diagnosis, treatments, rehabilitation, pain management, and life today. Listen here.
6. Community Spotlight | Ben Harris
For this episode, Ben Harris joined GG deFiebre of SRNA to talk about his experience with transverse myelitis (TM) as a result of neuroinvasive West Nile virus. They discussed his symptoms and diagnosis, rehabilitation, view of the healthcare system, and philosophy for day-to-day life. Listen here.
7. Immunology of Rare Neuroimmune Disorders Part 1
SRNA was joined by Dr. Philippe-Antoine Bilodeau and Dr. Anastasia Vishnevetsky for the first episode of a four-part “Ask the Expert” podcast series on “Immunology of Rare Neuroimmune Disorders.” The experts began by discussing innate and acquired immunity, immune cells, and antibodies. They explained the interrelatedness and interactions between different aspects of the immune system and the nervous system. They also gave a detailed overview of how several medications affect the immune system as treatments and therapies for rare neuroimmune disorders. Finally, the experts discussed how the brain and immune system may or may not change after an injury and the direction of neuroimmunology research. Listen here.
8. Immunology of Rare Neuroimmune Disorders Part 2
Experts Dr. Alex Simpson and Dr. Paula Barreras provided information on how the immune system interacts with the neurological system to cause rare neuroimmune disorders. They described each of these conditions and how different treatments impact the immune system. Finally, the experts talked about long-term issues related to immune-mediated diseases, including relapses, vaccinations, pregnancy and family planning, and genetic components. Listen here.
ABCs of NMOSD
1. Pediatric NMOSD | Part II, Treatment & Symptom Management
Drs. Jayne Ness and Silvia Tenembaum began by explaining symptoms of pediatric NMOSD. They discussed acute and ongoing treatments, considerations (including vaccines), side effects, and whether or not aquaporin-4 antibody levels are continuously monitored. The experts also compared and contrasted NMOSD and MOGAD in children. Finally, they provided information on long-term symptom management, repeated MRIs, and indications of a relapse that would require emergency medical care. Listen here.
2. NMOSD and Pregnancy/Family Planning
Dr. Anastasia Vishnevetsky and Dr. Tamara Bockow Kaplan discussed contraception and other factors that are important for people to plan with their neurologists and obstetricians. They talked about the implications of a relapse before or during pregnancy and how to approach certain scenarios. The experts also outlined the benefits and risks of several medications and options for treatment scheduling, symptom management, and MRI preparation. Finally, they described considerations for labor and breastfeeding. Listen here.
3. Long-Term Therapies in NMOSD
Dr. Dean M. Wingerchuk began by explaining the difference between acute versus long-term treatments and providing an overview of the most common long-term treatments for NMOSD. He then discussed side effects and effectiveness. Finally, Dr. Wingerchuk provided information on factors to consider when someone is considering which long-term treatment to use, including antibody testing, approval from medical insurance, and relapse occurrence. Listen here.