Day 2, November 24, Tuesday

The MRI confirmed the large lesions on the temporal and frontal lobes but the dye contrast indicated that it was definitely not a stroke or a blood clot. The lesions were on the outer part of the grey matter and not well defined. The location, size (fairly large), shape and other things were fairly “atypical” as the neurologist said. It could be a virus. It could be metastatic cancer. It could be a primary brain tumor. It could be something else. The neurologist said was really unsure, although she was leaning towards a virus. She thought that the clinical presentation was more indicative of a viral infection of the brain, but the scans did not look like a typical brain infection. The doctor in charge of the ICU was certain it was metastatic cancer. He said that the lesions on the outer gray matter were very typical of metastatic cancer, and it was not unheard of to have metastatic cancer be the first presentation of cancer elsewhere in the body. One of the radiologists thought it was more likely a primary brain tumor, given its size and shape. My mom also had an EEG to determine brain activity. The EEG showed continued seizure in the temporal lobes, and so a new anti-seizure medication was added to her regimen. The neurologist also started her on acyclovir just in case it was a viral encephalitis caused by the herpes simplex virus (note: my dad had a cold sore on his lip). She also mentioned that West Nile could have strange presentations (note: my mom had a bug bite behind her ear about 10 days prior that was particularly painful). My sister arrived, and we spent the day basically watching our mom move between asleep and a semi-conscious state. It was a challenging day as my mom’s blood pressure kept dropping to dangerously low levels, and the nurses had to keep intervening -- at times they pumped in saline at fast rates, and at other times they attempted to change her body position. These techniques would work for a short while, and then her BP would fall again. At 10pm they decided to put in a central line because the BP medication they wanted to use is too caustic for the peripheral veins. They felt that her continuing fluctuations in BP were just too unstable. Despite the central line, my mom continued to have BP problems all night long. The alarms in the ICU kept ringing all night. My mom alternated between moaning all night versus saying in a garbled, quiet voice, help me help me help me. While disturbing it seemed like some hope -- that she had some words -- any words -- and some awareness of the situation.

Day 1, November 23, Monday

My dad said my mom woke up with a headache, but seemed her typical self in the morning. They went for their usual morning walk. Then my mom did some work on her computer and around the house, and made lunch. After lunch, about 1pm, they went to the store. On the way to the store my mom was acting somewhat confused, according to my dad. He said she got out her earphones as if they were going to the gym, but they were going to the store. My dad asker her if she was OK, and she said yes, but he said, her behavior was off and it worried him. At the store my dad said that my mom seemed confused at the checkout counter. He paid for the item they purchased, and instead of walking out of the store with him, she stood at the counter waiting to pay for the item they had just purchased. He thought she might be having a stroke so he drove her straight to the ER. She walked fine to the car, but once they got the ER, she had some trouble getting out of the car, although she walked into the ER with my dad’s assistance. At 3:30pm my dad called me to say that the hospital thought my mom was having a major stroke, and they were sending her by ambulance to a different hospital where they top-rated stroke facilities. A CT scan at the hospital, however, caused the medical staff to question the original stroke diagnosis. The scan showed some sort of fairly large lesion on both the temporal and frontal lobes, which could be a blot clot/hemorrhaging, but could also be something else. So they sent her for a dye contrast MRI. Then she had her first (of several) grand mal seizures. By the time I arrived the hospital at 11:30pm (I had to travel half across the country), my mom was in the ICU and hooked up to saline, oxygen, heart monitor, anti-seizure, BP, and oxygen monitor, plus other things. Her temp was slightly elevated (99F). She was fighting to get out of the bed, but incoherent. Her left side was flaccid, and she kept having mini seizures. My dad and I spent most of the night trying to keep her from fighting herself off of the bed. Throughout the night her blood pressure varied sporadically from very high to very low, and her pulse remained high.

Day 0: November 22, Sunday

My mom seemed to be her typical vibrant self today. She is 71, and highly active, fit and trim. She goes to the gym for an hour a day, plus several walks during the day with my dad. She does not smoke or drink, and tries to eat clean. If anything, she is too obsessed with these things, and is a little too thin. I had a FT conversation with her this afternoon, where she seemed her typical alert and engaged self. Nothing struck me as out of the ordinary. That afternoon I had texted her a picture of my two dogs parking up a tree at a little squirrel hidden on a tiny branch. Literally within 30 seconds, she texted me back with a zoomed in cropped image of the squirrel. We laughed about that plus other things. Who would have predicted how the next day would unfold...

Auto Immune Encephalitis - A Journey

Auto Immune Encephalitis - A Journey This blog is devoted to telling my mom's journey with Auto Immune Encephalitis. It took nearly 2 weeks for her to be diagnosed, and both before and after her diagnosis, my sister and I scoured the internet looking for information about her condition. We found very little. What we did find did not document well the day to day experiences -- and what to expect -- especially as our mom was suffering in the acute phase of the illness. Auto Immune Encephalitis is a living hell, but one that you can recover from with the right treatment and time. I hope you find this information useful. I also hope it fills you with some hope, in what I know, can be a very trying time.