Autoimmune Encephalitis Survival Story

October 3, 2018

In the Summer of 2017, I was a 46-year old mom of two young children, working part time as an attorney, just returning from a weekend away with my girlfriends. I was having difficulty sleeping, but often had insomnia this time of year.  My thoughts were becoming jumbled and weren’t making sense.  Little did I know that my body was attacking my brain, causing it to swell.

The morning of July 11th, I brought my daughter to camp, then got into a minor accident in the supermarket parking lot and became very confused. I was imaging things that weren’t really there.  I was brought via ambulance to a local hospital where I was sedated and put into a medically induced coma for testing, including spinal fluid extraction.  They were not sure what was wrong with me and the local hospital didn’t have the capabilities to keep me sedated to undergo a CT scan.  Three days later, after many phone calls and strong-arming by my husband, I was transferred to a Boston Hospital where I was started on steroids and underwent a CT scan and additional spinal fluid testing.  There was no specific antibody found but luckily I responded well to the steroids.  Three days later, the steroids worked and I “woke up.” I was discharged 4 days later, having spent 10 days in the hospital.

My ultimate diagnosis was presumed Autoimmune Encephalitis. I was discharged on oral steroids and was still recovering, with short term memory problems, difficulty sleeping and coping with the realization of how close I came to dying.  At first although I understood what the doctors were telling me, there was a huge disconnect in that it seemed like it wasn’t really me that this was happening to.  I found the AE Alliance online which led me to a local AE specialist at MGH and I then transferred my care to her.  She had a different protocol and had me start weekly steroid infusions, with a very slow taper over the next 9 months.  My last infusion was in May 2018 and now I am more than a year after this ordeal began.

I am very thankful to have been diagnosed relatively quickly (although it didn’t seem quick for my family members when I was comatose, combative and spouting random thoughts in the hospital) and to live near such great medical care facilities and to have a wonderful support system in my husband and family.  Psychologically it was difficult to process and upsetting to think what would have happened if I weren’t properly diagnosed-would I just never have come home to my family? Would my outcome have been different if I wasn’t a well-educated middle aged white woman with no mental health history?  How many people are out there who may have this and aren’t properly treated? Ultimately my diagnosis was Hashimotos Encephalitis or SREAT.  A year after diagnosis I finally scored a 29 out of 30 on the neuropsych testing and am mostly back to normal with some tiredness. Of course my life has forever been impacted, I worry about relapse but am hopeful at this point that it will not recur and that AE will become a more distant memory as I continue to live my life.

Thanks so much Nancie for sharing your story with us!