Mike’s AE Journey

Mike shares his Mom’s story with Autoimmune Encephalitis

It was September 4th, 2018, 18 days before I was getting married. I received a phone call from one of my mom’s co-workers. Apparently, my mom didn’t come in to work that day and didn’t call in sick either. They got my number from her emergency contacts. They told me that she had been a little forgetful at work the past few months, but didn’t want to concern me because my wedding was coming up. I quickly phoned my mom. She was just hanging out at home! I asked, “Why didn’t you go into work today?”. She responded, “I don’t know.”

Something was wrong.

I immediately took her to the ER. They did all the usual tests, CT scans, bloodwork. While in the ER she asked me, “Who is that man sitting in the chair?”. I looked over, and no one was there.

Over the next few weeks my mom gets referred to a neurologist. This was our first in a long line of bad experiences with my mom’s medical group and health insurance. They denied EVERY test that the neurologist requested. She had to fight to get these done. After fighting for us, my mom receives tests, MRI’s, etc. They still can’t find anything. My mom stays with my fiancé and I the week before the wedding. She’s a little forgetful here and there, but nothing really big. She complains more about her neck pain, then being forgetful.

September 22nd, 2018, I get married. My wife and I go on a 2-week honeymoon. My mom goes back home. I arranged with some of her fellow employees to give her rides to and from work because I don’t trust my mom’s driving.

During the second week of my honeymoon I call my mom to say hello. She tells me she has an MRI scheduled for the following day. When I speak to my mom a few days later I ask her how the MRI went. She says, “Oh no. I forgot to go to my MRI.” I tell her to call her doctor to reschedule. I immediately call her co-worker and ask what happened to her MRI appointment. I thought you were going to give her a ride! Her co-worker said she did take my mom. I thought my mom forgot to go…but in actuality…she forgot she even went!

The day we got back from our honeymoon my mom moved in. She was a completely different person. Every two minutes her memory wiped clean. She couldn’t remember what year it was, what day of the week it was and had no concept of time. She doesn’t even remember our wedding from two weeks earlier. I had to stop working because we can’t leave her alone. When she’s alone she gets extremely confused, anxious, and extremely agitated.

Through this time my mom’s PRIMARY doctor suggested that she thought my mom had a mental breakdown and needed to talk to a therapist. She told us to “call the number on the back of her insurance card,” meaning WE had to go find somebody. When I called my mom’s insurance company it was only because the representative on the phone understood the uniqueness of this situation that her sent us referrals for neuro-psychologists.

We took her to a neuro-psychologist on October 25th, 2018. She recognized right away that this isn’t psychological. She recommended that we go to the ER that day to be tested and receive a spinal tap. From that day, we learn more and more. She has abnormalities on both of her temporal lobes. She is passed off to tertiary care at USC neurology.

Her neurologist at USC diagnosed my mom with auto-immune encephalitis ANTI-VGKC LGI1. My wife and I have never heard of this. My mom has done the usual treatments. IVIG, Steroids, and Plasmapheresis. Currently, my mom is starting Rituximab. We’re hoping that this does something. Her memory continues to be a problem.

With every treatment request our USC neurologist requests, my mom’s medical group/health insurance denies them. Our neurologist is in a constant battle with them. I, personally, have had numerous conversations begging and pleading with them to STOP denying her treatments. My mom has a brain disease, yet they continue to reject any treatments but they also never offer up solutions. It’s just deny, deny, deny. But our USC neurologist fights them every time. If you out there have this issue, please don’t stand down. Fight for your treatments. Don’t let any medical group/insurance company deny you the treatment you deserve.

In February 2019, my mom had massive seizures. Watching her seizures made us realize why her neck was always hurting. When she has a seizure, my mom violently turns her head as if she was trying to spin her head all the way around, straining all her neck muscles. We come to the realization that she’s been having night seizures. After a particularly violent seizure attack, we took her to the ER and was asleep for 8 straight days due to the amount of anti-seizure medication the doctors had to put her on. She spent another two days at the hospital. The next 12 days she lived at a rehabilitation facility learning how to walk, talk, eat solid foods and go to the bathroom/shower by herself again.

She’s back living with us now. She continues to make zero memories. She has little seizures, nothing big. Her neurologist at USC is amazing, walking us through everything.

It’s been extremely tough on me and my brand-new wife. No one expects their mom to move in with them the day they get back from their honeymoon. No one expects a disease like this, something so rare, to attack their mom. But we try to stay strong and be patient. We fight for her treatments. Hopefully there will one day be a cure and my mom will come back from this. She’s got another reason to try and get better…my wife and I have a baby boy due this July 2019.