The Story of an Anti-GAD Autoimmune Limbic Encephalitis Survivor

by Melody Wilson | Sep 3, 2019 | AE Warrior Personal Stories

September 4th, 2019 | Leigh Ann Broyles

My struggles with Anti-GAD Autoimmune Limbic Encephalitis started when I fell off the roof of my house. Well, technically my symptoms began way before the so-called “Roof Incident”. For months I had been behaving erratically, feeling physically and mentally exhausted but suffering from insomnia, having terrible headaches, a stiff neck, and vision changes. By the time everyone realized that something was wrong, it was too late for early intervention.

Then came “Roof-apocalypse 2017”. I woke up for work with a large bruise on my hip and leg, and somehow my brain convinced me that it was no big deal. I had fallen off the roof the day before when I was attempting to trim the large tree in our front yard. It was encroaching on our roof, and I had taken matters in to my own hands. I went into work that morning and complained about how much it hurt. The thing is, I have never been up on any roof, let alone my own. I suffer from a fear of heights. Getting up on a foot stool typically has me shaking in my boots. We don’t even have a ladder to climb up on. I was one hundred percent sure that I had been up there, though. My brain remembered falling into the bushes, remembered the impact, and remembered an elderly neighbor coming outside to check on me. Except we don’t have an elderly neighbor, and the tree looked the same. It was still sitting on the roof where it had been all along. I had never been on the roof, and as it turns out, my brain had been lying to me for a while.

A few weeks later, I was late to work, and my boss became worried. I can count on one hand how many times I’ve been late to work in the past 16 years. Being late is exceptionally unlike me, and is one of my pet-peeves. I work as a vet tech for an emergency and critical care department in a very busy specialty veterinary hospital and being late impacts patient care.

My husband had been working overnights at the time, and my boss decided to call him since I wasn’t answering my phone. My husband rushed home in the early hours of the morning and found me in our backyard. I was laying under a bicycle having a grand mal seizure. We still don’t know how long I had been outside, or how long the seizure activity had been happening, but we knew that it was long enough for all of the skin to be worn off of my knuckles, knees, and ankles. I had road rash on one side of my face as well. The date was May 25^th, 2017.

I was rushed by ambulance to the closest hospital, and the police were called. My husband (who is the sweetest, most gentle man) was interrogated and accused of beating me. I was accused of being a drug addict and alcoholic. The neurologist on staff refused to acknowledge that my issues were primarily neurological and didn’t even believe that I had suffered from a seizure. He sent out toxicology panels, all which came back negative. At this point, my family was aggravated, and demanded answers. Multiple EEG’s, CT Scans, and MRI’s later, nothing had changed. A false diagnosis of psychological issues vs. potential viral/bacterial meningitis was doled out to them. I was placed on anticonvulsants, IV fluids, and antibiotics (as my white blood cell count was elevated, and my kidneys had taken a hit from prolonged seizure activity).

I seemed to improve, and luckily, was transferred to a physical therapy center. By no means, was I normal at this point, but the neurologist “saw improvement” so he discharged me as quickly as possible. I assume it was like a horrific game of hot potato. I spent an unknown amount of time at the physical therapy hospital. I ended up developing nystagmus on top of my ataxia and aphasia. I had my second seizure, but this time it was witnessed by medical professionals. Honestly, I still don’t remember the first hospital, the physical therapy unit, or the majority of what was to come.

I was taken to my saving grace, Medical City Plano. I entered through the emergency room and was admitted into their neuro ICU. Because my seizure activity was resistant to multiple anti-convulsant medications at that point, I was intubated and placed in a medically induced coma. For the first time since my initial seizure, my family and friends found comfort in a doctor. Dr. Lei Wang (a neuro-hospitalist) took over my case, and oversaw all things relating to my care. She read through all my records and suspected that I may have Autoimmune Limbic Encephalitis. She immediately repeated all scans and started me on methylprednisolone and IVIG. She was, and continues to be, my knight in shining, sparkly high heels. I know that without her knowledge, insights, and willingness to have an open mind, I would likely be dead. Once she initiated treatment, she sent a plethora of antibody testing out. Some took longer than others, but in the end, I tested positive for GAD 65, and I finally had an answer and a diagnosis. I continually improved, ended up extubating myself (whoops!), and started to feel like a human again. When I “woke up” I had no idea why I was in a hospital and had lost all memory of what had happened over the past 4-6 months. I don’t remember moving into our new house. I don’t remember the Christmas before we moved. I don’t remember work, or illness, or anything in between. It’s a blank, blackness in my mind. I existed, but my memories do not.

In total, I received 9 IVIG transfusions, had over 50 IV catheters, two PICC lines, one central line, was on tapering steroids for a year, and two different anti-convulsant medications for a little longer than that. I spent a month hospitalized between the three facilities. I have completely recovered with no signs of relapse and no major lasting effects two years later. I continue to suffer from depression and anxiety and have been started on medications to help. There was a short time where driving to a doctor’s office would throw me into a full-blown panic attack, but since starting on medications, I can confidently walk in with a smile and steady hands. Better living through chemistry, I suppose!

To all of the patients, the families, and the friends who deal with this disease: It can be ugly, and it can be scary, but in the end please do not give up hope. Remission and recovery are possible. Living a normal life is possible.

Always keep fighting, and don’t ever give up. You are not defined by a disease.

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