What is MOGAD? Myelin Oligodendrocyte Glycoprotein Antibody Disease and a Conversation About What It's Like to Be Diagnosed with MOGAD

Episode Summary

In this deeply personal and educational episode, host Amy Mewborn opens up her own diagnosis journey with Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD)—a rare and traumatic autoimmune disorder often mistaken for Multiple Sclerosis (MS) or stroke.

Amy, who manages her MOGAD through an integrative health approach focused on gut health and anti-inflammatory living, sits down with two fellow warriors, Sandra and Marla, for an open conversation about life before and after their diagnoses. This interview provides essential, firsthand insight into the struggles of getting diagnosed, the severity of MOGAD flares (from complete mobility loss to blindness), and the resilience required to manage this complex neurological condition through intense treatment and profound lifestyle changes.

If you or a loved one are navigating a mysterious autoimmune disease or are curious about the power of lifestyle in managing nerve disorders, this episode offers invaluable clarity and support.

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Key Topics Discussed

• Understanding MOGAD: A detailed discussion of Myelin Oligodendrocyte Glycoprotein Antibody Disease, an autoimmune disorder that attacks the body's central nervous system and optic nerves, often resulting in severe physical and neurological symptoms.
• The Lengthy Diagnosis Journey: How MOGAD is frequently misdiagnosed as MS, stroke, or simply unexplained inflammation, leading to months or even a year of confusion and anxiety.
• The Impact of Autoimmune Flares: Personal stories detailing the traumatic onset of symptoms, including sudden leg paralysis (transverse myelitis), severe double vision, and complete temporary blindness (optic neuritis).
• The Search for Specialized Care: Marla’s crucial breakthrough moment of being directed to a neuro-ophthalmologist after receiving generalized, and unhelpful, advice.
• Acute Treatments: Discussions around aggressive treatments like high-dose IV steroids and plasmapheresis (plasma exchange) used to halt an acute MOGAD attack.
• Managing Chronic Symptoms: How guests cope with residual issues like nerve pain (managed by medication like Lyrica) and balance/vision issues, including the difficulty of processing depth and motion.
• Lifestyle as Medicine: The essential role of an anti-inflammatory diet, specifically reducing processed sugars and implementing the Mediterranean diet, to minimize inflammation and prevent flares.
• The Gut-Health Connection: Amy's perspective, rooted in her integrative health studies, on how gut health (aggravated by mold poisoning in her case) is deeply intertwined with autoimmune diseases and nerve function.
• External Perception vs. Internal Reality: The frustration of looking "fine" while dealing with internal symptoms like cognitive jumbling, balance issues, and chronic pain.

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Notable Guests, Statistics, and Moments

Special Guests:

• Sandra: Shares her experience of her legs suddenly giving out in May 2023, requiring weeks of hospitalization and six weeks of grueling rehab to relearn speech and walking. She celebrates a huge victory—today marks her last day needing assistance from PSWs (Personal Support Workers) due to her health improvements!
• Marla: Provides a powerful account of her rapid decline starting in late 2024, going from a numb leg to double vision, and ultimately losing sight in her right eye, all while being repeatedly told she likely suffered a stroke.

Key Medical Terminology & Treatments:

• Plasmapheresis: Marla details her 10-day hospital stay, which included 5 sessions of this treatment (the "radiator flush") to clean MOG antibodies from her blood.
• Lyrica (Pregabalin): Sandra uses this medication four times a day to manage severe nerve pain, which manifests as intense itching and a sensation of "bugs crawling under the skin."
• MOG Titers: The definitive blood test (processed at places like Mayo Clinic) that confirmed Marla’s MOGAD diagnosis after weeks of confusion.
• Amper: A central nervous system stimulator Marla is set to start, hoping to speed up signals through her injured optic nerve to correct depth perception issues.

Notable Quotes & Insights:

• On the Power of Resilience: Sandra shares how she used her sister to help guide her through speech therapy via phone pictures while recovering in the hospital, highlighting the necessity of keeping a positive mindset.
• On Inflammatory Triggers: Sandra reflects on her inflammatory episode: "I think that was a big part of what got me in the hospital was I like my coffee creamer. I liked the flavor and I had too much of it. And I think that's what caused all that inflammation."
• On the New Normal: Marla shares a profound quote she learned at a conference: "We do what we can." This philosophy helps her manage the daily reality of a life changed by MOGAD.
• On Diet Changes: Marla discusses how the intensive steroid treatment changed her palate—alcohol and certain sweets now taste like metal, ironically making her pivot to the healthy, clean-eating regimen easier.

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Resources Mentioned:

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