Suzanne’s Story, Toronto, Ontario

“It has a name!” That was my reaction after learning about Anti-NMDA Receptor Encephalitis for the first time.

This is my journey:

I believe I was the first documented case in Canada before Anti-NMDA Receptor Encephalitis was discovered. The fight for my life began in 1998. It has now been 16 years since my first diagnosis and words cannot express how happy I am to see the progress made in understanding more about this horrible disease and how much more awareness there is. It is also comforting to know that there is finally support out there for those still fighting, for their families and for survivors. At a time when I desperately needed answers, doctors did not have them and with each frightening symptom there was no information available or support groups to turn to.

For me it all started in March of 1998 when I first presented symptoms at the age of 24. I began to have difficulties with my memory, concentration and I was also emotionally unstable. This progressed to sudden drowsiness, double vision, panic attacks, hallucinations, short-term memory loss, behavioural changes and anxiety. I was admitted to Toronto Western Hospital where an ultrasound revealed that I had a 14 cm ovarian mass. I experienced respiratory distress, required intubation and was put on a ventilator. On May 8th the mass was removed which revealed that it was a teratoma. Two days after surgery I was alert and improving but then I began to deteriorate again. On May 14th I began to lose feeling from the chest down. I was treated first with intravenous steroid therapy and then Prednisone with no benefit. I then went into a deep coma. The treatment was switched to IVIG for 5 days. I continued to deteriorate and then bled out from the site of my trach tube. Please note I have no memory of this experience but only medical documents and my family to help me recount what happened during those 3 months. It was only until June 1st that I remember waking up from the coma. I still did not have feeling from the waist down and I had nerve pain in the chest area. I was later transferred to a rehabilitation centre where I would learn how to walk again. During that time I was prescribed Prednisone and eventually was weaned off. I continued to improve and by the end of August I was back on my feet.

I was doing well 3 years later but during that time it was discovered that I had two small cysts on my last ovary. It was in December of 2001 that strange symptoms started to appear. It began with the feeling of pins and needles in my right hand. I felt nauseous, had no appetite and was light-headed. The feeling of pins and needles would gradually creep up my arm and with it came the most bizarre symptom — my arm would contort and move on its own! This would occur when I touched anything that did not have a smooth texture. It was as if my arm had become hypersensitive. It was terrifying to lose control of my arm but more terrifying when no one in the ICU had seen this happen to anyone else before. I was hospitalized again and within a week that bizarre feeling progressed further up my arm, neck and it reached the top of my head. I started to have problems swallowing and I developed slurred speech. I was treated with prednisone and IVIG. I gradually recovered but I realized that I needed to remove the cysts to prevent further attacks. The cysts were removed in June 2002 and I was so thrilled to learn that my last ovary had been saved. I was ready to put this all behind me but not for long.

Seven weeks later I developed double vision and the feeling of pins and needles on my face. It was like a nightmare that would not go away. I will never forget the day I was told the cysts grew back. I was so shocked! How could this happen in such a short amount of time? Swallowing started to become laboured and in my heart I knew my body was about to shut down again and it could start with another respiratory attack. It was a difficult decision to accept but I knew my last ovary needed to be removed if I wanted to live. After surgery it took a few weeks to fully recover with the help of Prednisone and IVIG.

One year later I was hospitalized for optic-neuritis. Solu-Medrol and Prednisone helped to stop the deterioration of the optic nerve. That would be my final visit to the hospital.

I recently celebrated by 40th birthday and as each year goes by I am thankful for another year. It was the toughest fight of my life but I am stronger because if it. I am also thankful for my doctors who kept an open mind and took a leap of faith at the time when not much was known about this disease.

My thoughts and prayers go out to those still suffering and to their families. The one thing this disease cannot take away from us is our hope and faith and the unconditional love and support that surround us – that is what got me through it all.