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FAQS

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Do you have questions?

Our Expert Medical Advisors have the answers

In September of 2022, we met with our Medical Advisory Board at the Harvard Faculty Club in Cambridge, Massachusetts.  We took the opportunity to sit down for a Q&A with Dr. John Chen, Dr. Tanuja Chitnis, Dr. Brenda Banwell, Dr. Sudarshini Ramanathan, Dr. Michael Levy, Dr, Elias Sotirchos and Dr, Jon Santoro. This international panel of the top experts in MOGAD research answered what our community members have asked us the most.

The full video can be found on our MOGCasts & Videos page.

This was made possible by a grant from UCB.

What is the difference between Chronic Relapsing Inflammatory Optic Neuropathy (CRION) and Recurrent Optic Neuritis (RON)?
What are the MOGAD patients more likely to present with?

For patients who have had multiple attacks of ON and retinal nerve fiber layer (RNFL) thinning, is optical coherence tomography (OCT) a good option to verify a relapse of optic neuritis (ON)?
And how does the RNFL react during a relapse and how is it affected over time?

What's the latest understanding of titer levels inside the US and abroad?
Is there a consensus on this meaning?

Can you speak a little about the difficult cases in diagnosis?
For example, MS vs. MOG where we understand with an MS Pattern Type II, the MOG Antibody is detectable in 90% of patients?

Are there any new or upcoming diagnostic tools for adults and pediatric patients that can predict a relapse?

Can cognitive and behavioral changes be symptoms of new disease activity or only the result of residual damage from past disease activity?

What common psych overlap is there for adults and pediatric patients?
For example, is depression, anxiety, PTSD, bipolar or schizophrenia seen in these patients and are narcolepsy and sexual drive part of this overlap?

Can sleep difficulty be a symptom of MOGAD?

How will changes to the disease classification to make MOGAD a distinct entity help patients globally?

What do we know about the transition from childhood to adulthood, specifically as kids hit puberty?
Are they likely to transition away from encephalitis or ADEM to more ON and TM?
What else might happen?

How can a MOGAD patient distinguish between age related vision problems such as macular degeneration, retinal detachment, glaucoma, cataracts, etcetera, versus a MOG related symptom?
Do seniors with MOGAD need to be more proactive in screening for these diseases?

We know ADEM is more common in children with MOGAD, but are there any relapsing patterns identified for senior adults?
What can seniors expect as they age?

In challenging cases of MOGAD where patients are not responding to therapeutic approaches and are continuing to relapse, what are some of the strategies that doctors can try?

What are some of the upcoming treatments and clinical trials?

Do doctors ever consider weaning patients off preventatives as an option?
Is monophasic or multiphasic a factor?
And how long would someone need to be relapse free for it to even be a consideration?

What is the likelihood of more IVIG/SCIG efficacy studies for adults and pediatrics?

Please share about known atypical presentations in MOGAD, for example, autoimmune encephalitis, seizures, etcetera?

What is the long-term seizure risk for kids who have had encephalitis or ADEM?
Do they eventually outgrow them or is it a lifelong concern?