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A closer look at MS, NMOSD AND MOGAD, following the event organised by the European Charcot Foundation

28.02.2025

Written by Anna Revilla, Membership and Community Engagement Coordinator

Have you ever heard of NMOSD or MOGAD? 

Did you know that some people are initially diagnosed with Multiple Sclerosis (MS), only to discover later—after a period of uncertainty—that they actually have a rare condition related to MS. 

 

What are NMOSD and MOGAD?  

Neuromyelitis Optica Spectrum Disorder (NMOSD) is an autoimmune disorder that affects the optic nerves and spinal cord. It is similar to MS in that it can cause physical disability, vision loss, and cognitive problems. However, NMOSD has a more specific set of symptoms, which include swelling of the optic nerve, inflammation of the spinal cord, and sometimes paralysis. 

Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD) is a rare autoimmune disorder that affects the brain and spinal cord. It is similar to MS, in that it can cause physical and cognitive problems, but MOGAD is distinct in that it attacks the myelin sheath of the brain and spinal cord, causing demyelination and damage to the central nervous system. It is associated with the presence of antibodies directed against myelin oligodendrocyte glycoprotein (MOG). 

MS, MOGAD, and NMOSD are all demyelinating disorders of the central nervous system that can present with similar clinical features. Due to overlapping symptoms like optic neuritis, transverse myelitis, and brain lesions, MOGAD and NMO are frequently misdiagnosed as MS. 

Recognising the diagnostic challenges and the need for distinct treatment approaches for these conditions, EMSP has expanded its scope to include advocacy and support for people with MOGAD and NMO. This inclusion acknowledges the growing understanding that these are separate autoimmune conditions with different pathophysiology, biomarkers, treatment responses, and prognoses, despite their clinical similarities. 

 

Which are the main differences between MS, NMOSD and MOGAD?  

Multiple Sclerosis (MS) 

• Most common in young adults (20-40 years old), especially women 

• Mainly relapsing, with a small percentage of progressive cases 

• Good recovery between episodes, though symptoms like fatigue and cognitive issues can be disruptive 

Neuromyelitis Optica Spectrum Disorder (NMOSD) 

• Affects people aged 30-50, with a strong female predominance 

• Highly relapsing, with recovery often incomplete, leading to permanent damage 

• Main symptoms: severe vision problems and possible neurological impairment 

MOG Antibody Disease (MOGAD) 

• Affects a broad age range (0-40 years), with equal gender distribution 

• Mixed course: some patients relapse, while others experience only a single attack 

• Generally good recovery but with the potential for severe attacks, especially to vision 

 

But, delving more deeply, how are they diagnosed? 

For all three conditions, medical history, a physical exam, MRI of the brain, orbits, and spinal cord, as well as a lumbar puncture, are key diagnostic tools. In addition, for NMOSD and MOGAD, eye scans, vision tests, and blood tests (to detect specific antibodies) are also performed. 

 

Why sometimes NMOSD and MOGAD are confused with MS? 

The main reasons for misdiagnosis include: 

• Overlapping symptoms: Conditions like optic neuritis and transverse myelitis—among others—are common in all three diseases. 

• Relapsing-remitting course: NMOSD, MOGAD, and MS can all follow a relapsing-remitting pattern. 

• MRI findings: In the early stages of NMOSD, MRI findings can resemble those of MS, leading to potential misdiagnosis. 

 

And what happens if there’s a misdiagnosis?  

A critical issue is the potential consequences of misdiagnosis, particularly for patients with MOGAD or NMOSD who are initially diagnosed with MS. If they start treatment designed for MS, their symptoms could worsen. This delay in receiving the correct diagnosis can lead to several negative outcomes: 

• Delay in starting the right medication: Starting inappropriate treatment can slow recovery and cause further damage before the right medication is given. 

• Emotional distress: Patients may experience anxiety, frustration and confusion, especially if their symptoms don’t improve despite following prescribed treatments. 

• Financial implications: Misdiagnosis can lead to unnecessary medical procedures, tests and treatments that are not only ineffective, but can also place an additional financial burden on patients and healthcare systems. 

It’s vital that patients receive timely and accurate diagnoses to avoid these consequences and ensure they receive the appropriate care they need. 

 

Update on NMOSD & MOGAD event by the European Charcot Foundation 

I recently attended the European Charcot Foundation event where experts discussed the latest advances in NMOSD, MOGAD and MS. It was inspiring to see how rapidly research is moving forward, bringing new hope to those affected by these diseases. The discussions were highly technical, but the main message was clear – progress is happening, and it’s happening fast. If you’re interested in learning more, I encourage you to read the report Brain Health: Time Matters, which covers the latest advances and needs of MS, NMOSD and MOGAD.

The EMSP Young People’s Network brings together around 40 young people with MS (aged 18-35) from 19 European countries, creating a vibrant community where members share experiences, build meaningful connections, and advocate for their generation’s unique needs. This dynamic platform empowers young voices in MS and related disorders advocacy while fostering mutual support among peers facing similar challenges, strengthening the community through fresh perspectives and collaborative action.

If you are a young person living with MS, MOGAD or NMOSD and interested in joining YPN, please contact anna.revilla@emsp.org.