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