Ask the Expert 1401. Open Q&A on Neuromyelitis Optica Spectrum Disorder (NMOSD)

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