SRNA Soundwaves

Latest Episodes:

Ask the Expert 803. What is neurosarcoidosis? Feb 19, 2020

Show notes

SRNA is joined by Dr. Michael Bradshaw and Dr. Rohini Samudralwar for a podcast on "What is neurosarcoidosis?" The experts discuss the symptoms, diagnostic criteria, and potential causes of neurosarcoidosis. They talk about the relationship between neurosarcoidosis and the other rare neuroimmune disorders, as well as predispositions for the disorder. Acute treatments, long-term symptoms, and prognosis are discussed. Finally, the experts respond to several questions from the SRNA community.

Ask the Expert 802. Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know Feb 11, 2020

Show notes

Dr. Olwen Murphy and Dr. Ram Narayan join SRNA for a podcast on "Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know." The experts begin by discussing early symptoms of a rare neuroimmune disorder and what kind of medical care a person should seek if they are experiencing these symptoms. The experts then describe the process of diagnosing these disorders and what tests should be conducted. Acute treatments, rehabilitation, and next steps are discussed. The experts discuss prognosis and what should be done if a person feels they are experiencing a relapse.

Ask the Expert 801. Everything You Need to Know About Spasticity and How It's Treated Jan 30, 2020

Show notes

SRNA is joined by Dr. Philippines Cabahug and Dr. Jacqueline A. Nicholas for a podcast on "Everything You Need to Know About Spasticity and How It's Treated.” The experts define spasticity and tone, and they discuss the causes of spasticity. Treatment options are discussed, as well as differences between individual treatment goals. The experts describe the benefit of spasticity and the timeline for when spasticity may appear after diagnosis.

Ask the Expert 718. Optic Neuritis — When is it just ON and when does it mean more? Dec 12, 2019

Show notes

SRNA is joined by Dr. Amanda Henderson and Dr. Elias Sotirchos for a podcast on "Optic Neuritis: When is just ON and when does it mean more?" The medical experts begin by explaining what optic neuritis is, the symptoms, and how it is diagnosed. Treatments, both acute and ongoing, are discussed, as well as circumstances surrounding relapses. The medical experts then discuss ON in the context of other diagnoses such as neuromyelitis optica spectrum disorder, MOG antibody-associated disease, and multiple sclerosis. Finally, rehabilitation and current research on ON is discussed.

Ask the Expert 717. Fatigue and Rare Neuroimmune Disorders Dec 05, 2019

Show notes

SRNA is joined by medical experts Dr. Carlos Pardo and Dr. Bardia Nourbakhsh for a podcast on Fatigue and Rare Neuroimmune Disorders. The experts begin by describing the different causes and types of fatigue. They then discuss treatment options for people experiencing fatigue, both medicated and natural. How to manage the everyday effects of fatigue - whether it's at work, school, home, etc. - is discussed, and the experts give their perspectives on how to talk to one's healthcare providers about fatigue. Finally, the experts discuss the role research plays in studying fatigue and developing new therapies.

Ask the Expert 716. Genetic Study of AFM Nov 14, 2019

Show notes

The Siegel Rare Neuroimmune Association (SRNA) is joined by Priya Duggal, PhD, MPH to discuss the Genetic Study of Acute Flaccid Myelitis (AFM) being conducted at Johns Hopkins. Dr. Duggal discusses the eligibility of participants for the study, the process for how to enroll, and what to expect as a participant. She also discusses what researchers are hoping to learn about the genetic aspect of AFM and how it will inform the way AFM is treated. Finally, Dr. Duggal describes the processes she uses to keep genetic and other personal information secure, so that the information will never be used against participants. To enroll in the Johns Hopkins Genetic Study of AFM, email Dr. Duggal at pduggal@jhu.edu.

Ask the Expert 715. Nerve Transfers and AFM: Part Two Aug 13, 2019

Show notes

The TMA is joined by Dr. Jonathan Cheng from Children’s Medical Center and UT Southwestern Medical Center and Dr. Mitch Seruya Children’s Hospital Los Angeles. The surgeons discuss nerve transfers and how they are used for individuals with AFM. They talk about risks of surgery as well as the post-surgery recovery process. Dr. Cheng and Dr. Seruya also discuss the role of insurance in covering nerve transfer surgery, and they talk about upcoming research publications.

Ask the Expert 714. Nerve Transfers and AFM: Part One Aug 09, 2019

Show notes

The TMA is pleased to be joined by surgeons Dr. Amy Moore from Washington University School of Medicine and Dr. Dan Zlotolow from The Shriners Hospital for Children Philadelphia and Greenville, The Philadelphia Hand to Shoulder Center, and The Hospital for Special Surgery in New York. The doctors discuss the purpose of nerve transfers in patients with acute flaccid myelitis (AFM) and what the surgery entails. They discuss what qualifications they look for in a candidate for nerve transfer. Dr. Moore discusses nerve decompression and how she determines if a patient could benefit from this type of surgery. Dr. Zlotolow discusses phrenic nerve damage and restoring respiratory function in individuals with AFM.

Ask the Expert 713. Imaging Patterns in Myelopathies and Myelitis Aug 08, 2019

Show notes

The TMA is joined by Dr. Eoin Flanagan, Associate Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). Dr. Flanagan defines different imaging techniques and discusses how imaging is used to diagnose rare neuroimmune disorders. He discusses what imaging results can tell us about prognosis and the likelihood of developing multiple sclerosis. He provides guidelines for how often to get new MRIs after an inflammatory event, and what new imaging can tell you about your condition. Finally, research and the future of imaging techniques is discussed.

Ask the Expert 712. Understanding Spinal Cord Strokes and Other Vascular Myelopathies Jul 24, 2019

Show notes

The TMA is joined by Dr. Nicholas L. Zalewski from Mayo Clinic and Dr. Olwen Murphy from Johns Hopkins University to help our listeners better understand spinal cord strokes and other vascular myelopathies. Definitions of spinal cord stroke and vascular myelopathy were given. The experts explained the similarities and differences of spinal cord stroke and transverse myelitis. Signs and symptoms of spinal cord stroke were discussed, as well as diagnostic criteria and treatment. The experts also discussed long-term symptom management and prognosis of individuals diagnosed with spinal cord stroke, as well as the importance of rehabilitation.

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