Understanding Clinical Trials for MOGAD & the Importance of Patient Participation 

Every case is different and I can't advise you. However, I can explain how we think about relapsing MOGAD. When a person has a single optic neuritis with a positive MOG antibody, there is a 50/50 chance of not having any more attacks in the future. This chance may be different depending on your age and other risk factors. One of the best best predictors (we think) is the MOG antibody level. If the MOG antibody level declines over time to undetectable, that is associated with a lower risk of relapse.

I see, so getting regular blood work is very important for me. Another question doctor; does the Mogab always have been with me since I was born? Or something has triggered it’s production? Thank you

It is suspected that MOG is triggered by something in the environment, but we don't know, and we don't know what. Dr Levy talks about environmental and other causes and steps in the video near 14:30 - 15:30. Worth reviewing. I have relapsing MOGAD. I was/am hoping that some analysis of the CIRCLES data would ​be done that might surface some patterns about possible causes. I have found nothing that has been published based on CIRCLES other than some demographic data, however. I'm glad we now have trials for us patients with MOGAD, but the trial most I want to be in is for something I think is way more promising, and there is no trial for it, which horrifies me. I've discussed it in the fb group.

As for my case, I have been very healthy and never really get sick my whole life. Although I do work in hospital, I don’t think I have caught up with any disease that triggered my immune response. I am now looking into the dietary path, as few people mentioned that if you are sensitive/allergic to certain food, it can trigger cross antibody attack. Any how, lowering the consumption of food high in inflammatory response will always help more. I’m now avoiding all diary product to begin with.

How far away is your relapse from the first one? I had my first attack in late 2021, and now it has been a year. When it happened, none of the medication could help apart from plasmaexchange for me, it was quite tough to my body.