LGi1 Autoimmune Encephalitis Lived Experience – Lisa’s Story
As part of our My Brain and Me project, Lisa from Canada, shares her story of falling ill and living with autoimmune encephalitis (LGI1)
If you are affected by this story at all we encourage you to get in touch with our support team.
Video by Jack Chipman
Lisa’s Story:
I was diagnosed with LGI1 Autoimmune Encephalitis (AE) in February 2018.
Encephalitis is a devastating brain disease that affects about 500,000 people worldwide. The type that I have is called LGI1 Autoimmune Encephalitis – it is extremely rare and known to affect less than one in a million people. With Autoimmune Encephalitis the body starts to make an antibody that attacks the brain. In my case, this led to seizures, problems with cognitive function such as short-term memory loss and aphasia which makes it difficult to find the right word when speaking or trying to write something down. It also affected my mobility, and I was dependent on a walker for 3 months and then a cane for a further 3 months after that. Sometimes Autoimmune Encephalitis causes psychiatric symptoms too, but I was fortunate to not experience those.
Due to the rarity of this disease, it is important to tell my story as it often takes many months to reach an accurate diagnosis and begin treating this disease. The more people that know about this disease, both medical professionals and family members, the more likely we are to improve patient outcomes. Since I started telling my story in 2019, I have reached countless patients, caregivers and community members through my involvement in various organizations as a support group leader, patient advocate, and writer. As a public health professional, now recovered from LGI1 AE, I am grateful to be able to use my skills and personal experience to raise awareness about this disease.
Every patient has a unique journey but with AE there is often a common thread. Looking back, I know that my symptoms started in September 2016. I started experiencing numbness and tingling in my forehead that spread under my eyes, as if I was wearing a mask. By late May 2017, I also started having numbness and tingling down my left side, affecting my left arm and left leg. I had moments where I was walking or talking or eating and I had to pause to let a strange feeling kind of wash over me. As a family, we started calling these moments “episodes” and I would pause what I was doing for a few seconds until it passed. I didn’t know until months later that these “episodes” were actually Partial Focal Seizures and I was having 40+ a day. I was diagnosed with the seizure disorder, Epilepsy, shortly after I had a Grand Mal Seizure in July 2017.
I was put on several different seizure medications to try to control the seizures. The combination of seizure drugs eventually reduced my seizures to about 10 a day but I had increasing fatigue and was starting to show signs of short-term memory loss, aphasia (where you can’t find the right word when speaking or writing), and problems with my walking – my left leg would limp and drag. An MRI showed possible Limbic Encephalitis so I was treated with IVIG infusions for four days. After the third day of IVIG on October 25, 2017, I stopped having seizures and this felt like a huge breakthrough. Unfortunately, I continued to decline physically and cognitively and was admitted to Houston Methodist hospital in December 2017 for five days of steroid infusions. My condition deteriorated so rapidly that I became dependent on a walker to get around the room. I was very weak, and we were very worried.
After I was discharged, I spent the next 6 months attending five hours of therapy a week. I was fortunate to live close to an outpatient rehabilitation center that specialized in brain injury. I worked really hard one on one with a physical therapist, speech therapist, and occupational therapist. I had physical therapy in the pool, as well as in the gym. I eventually transitioned from the walker to a cane and gradually gave up the cane too. I was surprised by how useful speech therapy was as I could still speak in the aftermath of AE, but speech therapy offered so much more. Speech therapy taught me how to rebuild my cognitive function and memory and learn how to multi-task again by filtering out distractions. As my brain and body began to heal, I was introduced to different types of therapy such as vestibular therapy to help with balance, and vision therapy to help with issues such as convergence and divergence which affects the ability to focus correctly.
In addition to all the therapies, I also adopted an anti-inflammatory diet and stopped eating anything that could cause inflammation. I cut out sugar, gluten and dairy. I stopped drinking alcohol. I stopped eating any processed foods and limited my meat consumption, choosing to only include wild-caught fish and some chicken in my diet. I did this under the guidance of a functional kinesiologist (a type of functional medicine doctor or naturopath), who worked with me regularly to restore balance within my body through various treatments and specific supplements. I started a daily mediation practice and listened to my body, giving in to sleep when my brain began to feel overwhelmed, allowing it time to heal. It took a lot of hard work, commitment and support to heal from the effects of AE on my brain and my body.
Everything we learned about AE indicated that early and aggressive treatment led to the best outcomes. We questioned whether we were doing enough? We travelled to a University Medical Center for a second opinion from a neurologist with more experience treating AE. This resulted in a more specific diagnosis of LGI1 Autoimmune Encephalitis through testing for antibodies in blood serum. Interestingly, none of the lumbar punctures (spinal taps) ever came back positive for AE antibodies. We later learned that LGI1 AE is often detected in blood serum only.
Following my diagnosis with LGI1 AE, I started to receive infusions of Rituximab every 6 months. Rituximab worked to teach my body to stop making the harmful antibodies that were attacking my brain my suppressing (dulling down) my immune system.
In November 2019, I had an MRI, that showed the scar on my brain, where the seizures originated from, had healed!! I gradually weaned off seizure medication over the next eight months.
In October 2021, I had my last Rituximab infusion and in January 2022 I tested negative for the LGI1 antibody that was responsible for the AE. Cautiously, we began to celebrate that I was in remission!
In November 2023, I finally got Covid-19 and it caused a brief recurrence of my old neurological symptoms of numbness and tingling, memory issues, and a bit of difficulty walking. Thankfully, after some oral steroids, the symptoms went away. My neurologist did not consider these symptoms to be active AE, but saw it as my immune system responding to the Covid-19 virus by exacerbating some old neurological weaknesses.
I will be forever grateful for my ultimate diagnosis and recovery from LGI1 AE. I am grateful that my husband, children and family never gave up hope and advocated tirelessly on my behalf for diagnosis, treatment and aggressive rehabilitation. Today, I am living a healthy, active life in the mountains in British Columbia, Canada, where we now live. AE was a huge challenge to overcome but with hard work and lots of resources and support, I was able to put it behind me.
AE did leave me with some unwanted gifts such as macular degeneration, osteoporosis, and ongoing challenges with memory and word finding, especially when I am overtired or have been overstimulated. I continue to benefit from an anti-inflammatory diet, daily meditation and the healthy environment where we live. I continue to build up my stamina driving longer distances and in busier environments. I am very grateful to be where I am today.
I will be eternally grateful that I never, even in my darkest days, gave up hope for recovery. Somehow I always believed that AE wasn’t going to be the end of my story. No two journeys with autoimmune encephalitis are the same but I hope that some of what I have shared is useful to you on your journey to health.
Read more about Lisa at www.lisalauter.com
Find out more about LGi1 Autoimmune Encephalitis here.
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