MOGAD : 10+ years and looking for some perspective
Hello I got my first episode of MOGAD in August 2015 when I was 15,F. The broader context is that I had my first relapse (Ataxia , Nausea ) in August 2015 when I was 15 (F), Optic Neuritis in December 2015 . Both were treated by IV steroid followed by oral steroid . Vision didn’t come back so I was put on plasmapheresis in January 2016 to treat that and a new Ataxia . Another ataxia followed in April 2016 , was started on Azoran 150 MG after discharge following a steroid IV course. In August 2016 another ataxia followed . Was treated with IV IG. Two months later Rituximab replaced Azoran for me . I got 10 infusions of 1000 MG every 6 to 9 months upto February 2024 . In between had two relapses , one in March 2018 and one in April 2023.
Moved to UK from India in 2023 for a Masters, saw doctors at Oxford who said that since I am now MOG negative I can stop Rituxmab , particularly since only 2 of my relapses had radiological changes while other only had clinical symptoms. On return to India I reached out to a doctor recommended by Oxford doctors . She agreed with their advice and gave medicines to do symptomatic treatment , though my MOG had retuned to be positive .
Here are my questions
- Has anyone lived with MOG longer than me and is older than me ? I would love to hear how life and work has been?
- Has anyone managed to deal with nausea and fatigue — remain some of my key challenges
- Has anyone gone from MOG positive to negative and again positive . How has your doctor approached treatment .
Posted Aug 20, 2026, 2:50 PM UTC