At Christmas time in 2015 our world was turned upside-down. I stopped sleeping, became unnaturally stressed, and started doing things that were just ‘not me’. At first the doctors put it down to ‘stress’ and thought I was having a mental breakdown. I was placed in the mental health unit, and then began treatment for disorders such as bipolar and schizophrenia. I began having ‘repetitive movements’ that looked like seizures, and I was not present when anyone talked to me. I was not eating, or sleeping, and I was confined to one-on-one nursing care.
None of the treatments worked, and eventually I stopped breathing.
I was taken to the emergency department, where they still could not work out what was wrong. Every scan and test they did showed that I was a normal, regular, healthy 22 year old - except I very clearly wasn’t! I was unable to breathe on my own so was intubated, placed on life support and in an induced coma. Due to the length of time I was expected to be in a coma for, they performed a tracheotomy. During this time, an amazing Neurologist Dr Justine Wang was on shift. She had a couple of ideas of what could be wrong, and these included either central nervous system lymphoma, or anti-NMDA Receptor Auto-Immune Encephalitis. The decision was made to start treatment for anti-NMDA immediately, as this was extremely time-sensitive. I was given a lumbar puncture, and my spinal fluid was sent off for testing.
Dr Wang was correct in her hunch - I did in fact have anti-NMDA Receptor Auto-Immune Encephalitis. The next month involved treatments such as steroids, plasmapheresis a total of SIX times (where your blood gets separated from the red and white blood cells, mixed with good white blood cells from donors, and put back together and given back to you), a light chemotherapy and intravenous immunoglobulins (ivig). (Post continued in comments!)