2024 RNDS | What’s my Diagnosis? Community Members Share their Diagnostic Journey @wearesrna

Uploaded December 2024 | Updated September 2026, 2 weeks ago

At the 2024 RNDS, Dr. GG deFiebre of the Siegel Rare Neuroimmune Association (SRNA) spoke with community members, Angela Jackson, Andrew Jopson, Ashley Harrington, Lyd Lacey and Andreas Melitsanopoulos about their diagnostic journey. The participants shared their diagnostic journeys and the onset of their symptoms [00:00:30]. The conclusion revealed the specific diagnoses of each participant and emphasized the similarities and differences in their experiences [00:35:55].

00:00 Introduction and Panel Overview
00:37 Panelist Introductions
01:29 Initial Symptom Onset
07:39 Detailed Symptom Experiences
21:49 Diagnostic Tests and Challenges
27:22 Initial Treatments and Responses
30:24 Personal Reflections and Support
35:55 Revealing the Diagnoses
37:36 Conclusion and Organizational Impact

2024 RNDS | What’s my Diagnosis? Community Members Share their Diagnostic Journey

$Ask the Expert 1403. Open Q&A on MOG Antibody Disease (MOGAD) In this SRNA Ask the Expert episode moderated by Krissy Dilger, Dr. John Chen of the Mayo Clinic answered audience questions about MOG antibody disease (MOGAD). He discussed diagnosis and the importance of titers and live cell-based assays given possible false positives [00:02:42]. Dr. Chen reviewed acute management with early high-dose steroids, prolonged tapers, and escalation to plasma exchange for severe or steroid-refractory attacks, as well as evolving long-term options including IVIG/subcutaneous IG and IL-6 blockade [00:04:14]. Audience questions covered relapse prediction, vision recovery timelines, fatigue, pregnancy, heredity, symptom interpretation, and whether to stop immunotherapy when antibodies become undetectable [00:12:13]. Finally, Dr. Chen described current and upcoming research, including a trial that is currently enrolling participants, and future prospects for optic nerve regeneration while cautioning against unproven stem cell clinics [00:41:37]. John J. Chen, MD, PhD attended the University of Virginia for his undergraduate and combined MD/PhD degrees and completed his Ophthalmology residency and Neuro-Ophthalmology fellowship training at the University of Iowa. He then took a position at the Mayo Clinic in 2014 where he specializes in Neuro-Ophthalmology. Currently, he serves as a Consultant and Professor of Ophthalmology and Neurology, and Neuro-Ophthalmology Fellowship Director at the Mayo Clinic. Among Dr. Chen’s awards and honors are the AAO Senior Achievement Award, Top Doctors in Minnesota, the Heed Fellowship, Real World Ophthalmology Inspiring Academic Leader Award, Ophthalmology Teacher of the Year Award four times leading to induction to the Educators Hall of Fame, and the Mayo Clinic Distinguished Educator Award – awarded to the top educator at Mayo Clinic in Rochester. He is an Associate Editor for Ophthalmology and the Journal of Neuro-Ophthalmology, has authored more than 250 peer-reviewed publications, and focuses his research on ophthalmic imaging, idiopathic intracranial hypertension, and optic neuritis, particularly NMOSD and MOG antibody–associated disease. 00:00 Welcome and Introductions 01:08 What Is MOGAD? 02:42 Causes and Triggers 03:23 How MOGAD Is Diagnosed 04:14 Acute Attack Treatments 06:35 Steroid Side Effects 08:13 Testing During Treatment 09:09 Long Term Therapies 12:13 Interpreting MOG Positivity 16:51 Eye Symptoms and Vision Fluctuations 20:12 Antibody Titers and Severity 21:19 Relapse Risk After First Attack 23:09 Seizures and Encephalitis 24:17 Vision Recovery After Optic Neuritis 25:13 Acute Treatment Window 25:57 Hereditary Risk Questions 26:35 Stopping Azathioprine Safely 29:56 Managing Post Attack Pain 30:16 Steroids IVIG and Plasma Exchange 32:08 Infections as Triggers 33:01 Retesting MOG Antibodies 35:01 Fatigue and Workup 36:23 Prognosis and Life Expectancy 37:45 Tinnitus and Brain Pressure 39:05 Pediatric and Pregnancy Concerns 41:37 Trials and Future Regeneration 46:05 Research Resources and Wrap Up$

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