In SRNA’s Ask the Expert episode moderated by Krissy Dilger, Dr. Elena Grebenciucova described neuromyelitis optica spectrum disorder (NMOSD) symptoms including optic neuritis, transverse myelitis, brainstem syndromes, and intractable hiccups [00:01:05]. She outlined diagnostic evaluation using MRI and correct blood-based antibody testing (preferably cell-based assays), common diagnostic pitfalls, and the need to rule out infections before immunosuppressive treatment [07:08]. Dr. Grebenciucova reviewed urgent relapse management with IV steroids and early plasma exchange, side effects, long-term preventive therapies (FDA-approved and off-label) [14:02]. Finally, she answered community questions on supplements, chronic optic neuritis, rehab appeals, pain/spasticity, pregnancy planning, long-term treatment duration, mental health, seronegative syndromes, follow-up frequency, and recovery expectations [25:22].

Elena Grebenciucova, MD completed neurology residency at the University of Chicago in Chicago, Illinois. Dr. Grebenciucova has been interested in autoimmune disorders of the central nervous system, including rare neuroimmune disorders, since medical school. After residency, she completed a neuroimmunology Fellowship under the mentorship of Dr. Brenda Banwell and Joseph Berger at the Perelman School of Medicine of The University of Pennsylvania. Currently she is an assistant professor of Neurology (MS/Neuroimmunology) and neurological infections at Northwestern University in Chicago, Illinois, and she runs the Transverse Myelitis Center there. Dr Grebenciucova sees patients with rare autoimmune conditions including NMOSD, MOGAD, transverse myelitis, and autoimmune encephalitis.

00:00 Welcome and Introduction

01:05 What Is NMOSD?

01:59 Symptoms and Relapse Signs

03:27 What Causes NMOSD?

07:08 How NMOSD Is Diagnosed

10:09 Key Tests and Pitfalls

14:02 Acute Attack Treatment

17:18 Steroid Side Effects

22:19 Long-Term Therapies Worldwide

25:22 Community Questions, Beginning with Vitamins

27:40 Optic Neuritis Breakthroughs

28:47 Chronic Optic Nerve Inflammation

29:19 Winning Insurance Appeals

31:23 Waist Band Pain and Spasticity

34:04 Pregnancy and Family Planning

37:40 Stopping Long-Term Treatment

39:40 Long-Term Side Effects

43:04 Mood and Personality Changes

49:47 Trials for Seronegative NMOSD

52:55 Follow Up Visit Schedule

55:34 Relapse Recovery Timeline

58:02 Closing

In this episode, Krissy Dilger of SRNA interviewed Dr. Vivien Xie regarding the significance of brain lesions in pediatric MOG antibody disease (MOGAD). Dr. Xie explained the autoimmune nature of MOGAD and the common occurrence of optic neuritis in young patients [00:01:28]. She described her study comparing children with optic neuritis who had brain lesions to those who did not, revealing that brain lesions often did not result in additional symptoms [00:02:41]. The findings suggested that brain lesions didn't significantly impact long-term outcomes, which may provide reassurance for patients with concerning MRI results [00:06:43]. Finally, they discussed the study’s implications for better understanding different phenotypes of MOGAD and improving patient prognosis. Future research directions include more detailed MRI analysis and cognitive outcome assessment [00:12:29]. You can read about this multicenter study here:

https://pubmed.ncbi.nlm.nih.gov/41167051/. This work was completed with philanthropic support from the Global Autoimmune Institute and Fighting Fires with Owen.

Vivien Xie, MD, is a pediatric neurologist and neuroimmunology fellow at Children’s National Hospital and MedStar Georgetown University Hospital. Originally from Baltimore, she earned her undergraduate degree in biology from the University of Maryland, College Park and her medical degree from the University of Maryland School of Medicine. She then completed a child neurology residency at Children’s National Hospital, where she discovered a passion for helping young patients and their families navigate rare and often life-long neuroimmunologic disorders.

Dr. Xie's research interests include pediatric multiple sclerosis and MOG antibody–associated disease, with publications and presentations spanning national and international conferences. She is a committed academic clinician dedicated to advancing clinical trials and research initiatives to improve diagnosis and care for children with rare neuroimmunologic conditions.

00:00 Introduction

01:28 Understanding MOG Antibody Disease

02:41 Research Motivation and Background

05:33 Study Design and Methodology

06:43 Key Findings and Implications

12:29 Future Research Directions

14:10 Conclusion and Acknowledgements

In this "ABCs of MOGAD" episode, "Steroid Dependence," Krissy Dilger of SRNA was joined by Dr. Eoin Flanagan from the Mayo Clinic in Rochester, MN. They began with a summary of how steroids are used to manage MOG antibody disease, particularly during acute attacks [00:01:25]. Dr. Flanagan described the mechanics of steroids in reducing brain inflammation and the importance of early treatment [00:04:14]. They discussed the concept of steroid dependence and the complications that arise when tapering down the steroid dose [00:05:46]. Dr. Flanagan highlighted alternative treatments to manage steroid dependence and emphasized the importance of working closely with healthcare providers to safely reduce steroid use over time [00:09:42].

Eoin Flanagan, MB, BCh is a Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). He completed his medical school training at University College Dublin in Ireland in 2005. He did a medical residency in Ireland and then completed neurology residency, fellowships in neuroimmunology and a master's in clinical and translational science at Mayo Clinic (Rochester, MN). He works in the Autoimmune Neurology and Multiple Sclerosis Clinics and the Neuroimmunology Laboratory at the Mayo Clinic.

His clinical expertise and research are focused on inflammatory myelopathies and their imaging patterns, myelin oligodendrocyte glycoprotein (MOG) antibody associated disorder, neuromyelitis optica spectrum disorders, autoimmune encephalitis, paraneoplastic neurologic disorders, and multiple sclerosis. He is principal investigator on an NIH RO1 grant studying MOG antibody associated disorder.

00:00 Introduction

01:25 Understanding Steroids in MOG Antibody Disease

04:14 Steroid Dosage and Administration

05:46 Steroid Dependence in MOGAD Patients

09:42 Managing Steroid Dependence

14:02 Balancing Inflammation Control and Steroid Risks

17:31 Conclusion