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Amanda’s Story: My NMDAR/MOG Journey

Back in 2016, while training for a 100km walk, running my own Property Management business and doing temp work, I stressed my self out to the max. Working somewhere different each day meant continuously learning, I was training every weekend, trying to fundraise, and I started to go next level; making lists, and not being satisfied unless I did everything on the list, because if I didn’t, then something wouldn’t get done and that wasn’t good enough. I stopped sleeping. I was burning my candle at both ends. I didn’t realise what it would bring about…

Amanda with friends finishing a 100km race. They are all wearing blonde long-haired wigs

My partner knew something was up in February that year, so he told me to rest, which is what I needed but is easier said than done with such a scrambled mind! Then my family got involved. They took me to the hospital and I ended up staying there for two weeks for tests, medication and rehabilitation, because I had a psychotic episode. All my tests came back clear, and after a week or so the Olanzapine that I was given started working… the diagnosis was… well there wasn’t one! Fatigue, burnout, alcohol intake above recommended limit (I drink a red wine with dinner OCCASIONALLY)… sound familiar? If you’ve seen the movie ‘Brain on Fire’….  Anyway, finally I was discharged, just before my birthday. I had to be monitored so, I lived with Mum and Dad for a few months, saw a psychologist and psychiatrists regularly and stayed on medication (Olanzapine) for a year. The medication completely dulled down my personality, and I put on about 30kg! Not a fun time.

 

Many bottles of medication for Amanda

At the end of 2017, I was no longer on medication, and I was doing good. I was working full-time again, and made new lifelong friends. I also did a 50km walk! Then I got vision issues so I went to the doctor, who said I have ‘Dry Eyes’, and sent me on my way with eye drops. A week later, I was back there, so he referred me to the Eye Clinic.

Amanda
Amanda completing a 50km walk

When at the eye clinic, he found that I had Optic Neuritis, which can commonly be linked to an Multiple Sclerosis-type illness.. I was up to the hospital that day and they did all sorts of tests over the next 6 months as an outpatient. In the meantime, I developed symptoms such as urinary retention, pain/banding, itching, and twitching. The tests included MRI (which I’ve now had a lot of), a lumbar puncture, an evoked potential test, and my blood got sent to the Mayo Clinic in the UK for testing. Results: NMDAR (encephalitis) and NMOSD (MOG), which finally explained what happened in 2016!

 

Amanda before and after steroids

I haven’t had any episodes of psychosis since 2016, but I have a daily struggle with the other symptoms. I still can’t believe psychosis happened, but I do make sure not to overdo it now as much as I can, and rest when needed, because I don’t want another episode! It has helped me to have a renewed respect for those with mental health illnesses and disabilities. 

Since then, a lot more has happened brain-wise, and my husband has stood by my side despite all the things, so I’m really grateful for him, and my family and friends. It’s been a journey.

My faith has played a big part in helping me through all of this. 2 Timothy 1:7 always goes over in my mind:  ‘For God does not give us a spirit of fear, but of power, love and self-control.

Also, ‘The One who us in me, is greater than the one who is in the world’ (1 John 4:4) ❤ He has a plan!

For those who don’t know what NMDAR is, watch ‘Brain on Fire’. It’s a little bit like my story in a movie… Susannah has NMDAR also!

By Amanda Hoebergen

Massachusetts General Hospital
Harvard University

Michael Levy, MD, PhD

Dr. Levy is an Associate Professor in Neurology who was recently recruited to lead the new Neuroimmunology Division at the Massachusetts General Hospital. His mission is to build a combined clinical and research neuroimmunology program to develop therapies for patients with autoimmune diseases of the central nervous system. Dr. Levy moved from Baltimore, MD, where he was one of the faculty at Johns Hopkins University since 2009 and Director of the Neuromyelitis Optica Clinic.

Clinically, Dr. Levy specializes in taking care of children and adults with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease and acute disseminated encephalomyelitis. In addition to four monthly clinics, Dr. Levy is the principal investigator on several clinical studies and drug trials for these conditions.

In the laboratory, Dr. Levy’s research focuses on four main areas:
1. Development of animal models of neuromyelitis optica (NMO) with the goal of tolerization as a sustainable long term treatment: His team generated a mouse model of NMO based on pathogenic T cells reactive against the aquaporin-4 water channel. Now, they are using this mouse model to create a tolerization therapy to desensitize the immune response to aquaporin-4.
2. Genetic basis of transverse myelitis: His team discovered a genetic mutation in VPS37a found in a group of patients with a familial form of transverse myelitis (TM). To understand how this gene is involved in this immune process, they generated a mouse model with this mutation.
3. The immunopathogenesis of MOG antibody disease: This may depend on a subset of T cells called gamma/delta T cells. These specialize T cells react to MOG in mouse models and attack the central nervous system. In addition to understanding why and how these T cells are involved in MOG antibody disease, they are developing a treatment to target these cells.
4. Biomarker assays for other autoimmune diseases of the central nervous system: They are developing assays that detect autoreactive T cells in NMO and MOG antibody disease. In parallel, they are screening for novel antibodies to glial cells in related disorders such as encephalitis and optic neuritis.