I am one of the lucky ones. But, in a way, I think I inadvertently helped make my own luck by contacting the Mayo Clinic when I did. A little over two and a half years ago, my wife and I flew from our home outside of Kansas City, MO to the San Francisco Bay Area to visit family. When we returned and got off the plane in late May, my memory was almost completely gone except for a few instances from my childhood which, since I was 68 at the time, was a long, long time ago.
I started having seizures. At first, just a couple of times a day, gradually increasing to 20 or more a day. I had frequent feelings of nausea and incredible weakness (I couldn’t walk even an 8th of a block without being completely exhausted.) I contacted my physician and he tried to schedule me with the neurology department. They subsequently referred me to another neurological testing group, but scheduling with them was delayed while they were awaiting insurance approval. In retrospect, this may have been another stroke of luck, because, with my symptoms getting worse, I finally contacted the Mayo Clinic in Rochester on a Thursday or Friday in July. Apparently I used the right buzz words because they responded right away and said, “Can you come in on Monday?” Even though they were an out of network provider on my insurance plan, my wife and I jumped in the car and drove up there.
After being run through a battery of tests and being seen by several doctors, I was diagnosed with LGI1 Autoimmune Encephalitis, and placed under the care of Dr. Eoan Flanagan who began treating me with high dosage prednisone – this was about the first of August. I had my last known seizure in late October, though most of the other symptoms have persisted. At this point, I’m certainly not cured, but am adjusting to a new reality.
My memory is still very spotty. For example, as I am writing this, we are once again in California visiting family. While talking to my daughter, who just recently moved back here from Kansas City, I mentioned that I hadn’t been back to California since this had happened and that I was leery about flying even though I knew intellectually that flying had nothing to do with causing the disease.
My wife gently reminded me that yes, we had flown out here just last year. I have no memory of that. I lived in this area a large portion of my life, but as we drive around, it’s like I’m in a foreign country. I don’t recognize much of anything I see. The funny thing about my memory loss, though, is that I remember people, just not places or events. I’m currently in the process of being weaned off the prednisone and replacing it with Rituxan (I had my first Rituxan treatment last August.)
I have no idea what the future will hold, whether I’ll get my memory back or not. But I’ve determined to not let that impede my enjoyment of life while it happens. It’s hard sometimes when I’m with friends or family when the conversation turns to reminiscing about a past which I can’t remember, but I know there’s nothing I can do about that. My new motto is “Live in the Moment.”
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I have been a nurse since 1985. I was working as a nurse case manager when I was at work in December 2017. A co-worker, who I have worked with for years, noticed I was acting strange- laughing inappropriately, busy but not really doing work. We shared an office and she took my keys out of my purse because I had talked about going home and that idea scared her.
What neither of us knew at the time was that she saved my life. Because I couldn’t find my keys, I went back to the unit I worked on, shortly after that I had a seizure. I was hospitalized and after a few days of testing, I was diagnosed with anti-NMDAR encephalitis. Anti-NMDAR stands for anti-N- methyl-D- asparate receptor encephalitis. It is an autoimmune disease where the body creates antibodies against the NMDA receptors in the brain. The antibodies disrupt normal brain signaling and can cause seizures, memory problems, cognitive issues, speech disorders, neuropsychiatric symptoms as well as other symptoms.
I was treated with steroids, IVIG and plasmapheresis. I had inpatient and day therapy rehabilitation. I also did a computer cognitive therapy program. Recovery can be slow. Many patients with autoimmune encephalitis are left with memory problems, cognitive deficits and have problems in situations that are cognitively demanding. Memory continues to be an issue since my diagnosis with AE.
I have a calendar and use my phone to keep track of my schedule but what I have found is that people treat me as I was before, that would be great if I had my normal memory, but I don’t. That is part of the problem with having an invisible disability. If you didn’t know what happened to me, I look and can for the most part act “normal”- whatever that is. But in truth, I have trouble remembering previous conversations.
What was easy for me in the past takes far more of my energy than it used to. I find it is difficult to follow a conversation in a group. There is too much information for me to take in at one time. Sometimes in a conversation with several people, it exhausts me, I lose my place, and end up not trying to carry on and be a part of the conversation- it’s just too much for my brain to process. I just give up. I may experience “flooding” where my brain cannot take in so much information at one time. People in the conversation may notice I get quiet. They may think that I disagree with them or don’t like the topic. In truth, I may have lost track of the conversation and have no idea what the topic is.
Things that were easy for me in the past are difficult for me now. For example, recently my sister sent me a text asking me to bring two side dishes to a party to celebrate my Dad’s birthday, I don’t remember having a conversation about it at all. I looked back at my texts and found a message from her. In the past, this would be something I would remember and follow up on. Now, I have no memory of the subject at all.
There are ways for others to help those of us with Autoimmune Encephalitis become more comfortable in these situations. So, for family members and friends of those with AE these tips may be helpful.
1. When you start a conversation about plans previously made, talk about the previous discussion that was held. Help by cueing the person. For example, you may say “I messaged you before about dinner on Friday the 12th and wanted to make sure you were still available.” That reassures me that I did have a conversation about it in the past and reminds me of the topic and date. It also allows me a chance to confirm it.
2. If you are asking me to do something, refer back to what had previously happened and provide contact information if you have it, for example, “Last year for the block party you scheduled the Police department to come and register bikes, can you do that again this year? if you can, I will send you the contact information, Let me know by Monday the 8th”
3. If we have made plans, contact me several days or up to a week before to confirm, for example, “I have on my calendar that we were going to the movies on Friday the 10th at 7 pm, will that still work for you?”
4. If we are going someplace where there will be people I may have only met once before, take the time to reintroduce me to them. My husband will usually tell me, “you met them before at the game, but this is John and Mary”
5. When my husband leaves for work and I am still asleep, he leaves a note telling me that he left for work. He knows that if I am not aware, I won’t be sure of the day of the week and may look around the house for him and be anxious about where he is.
Letting family and loved ones know that incorporating these types of supports helps us remain social and successful is truly appreciated. It can keep us from becoming overwhelmed or “shutting down” and allows us to participate fully with more confidence. Trying to stay socially involved is important. Taking a little extra time to do these things will help us to recall previous discussions and allow us to feel more comfortable.
As time goes on, and friends and family learn the types of difficulties their loved one is experiencing, it will be easier to anticipate situations that they may have trouble managing. Coming up with solutions by troubleshooting these situations is the best support you can provide.
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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org
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 25th, 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.
Your generous Donationsallow IAES to continue our important work and saves lives!
Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to: IAES@autoimmune-encephalitis.org
Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society cannot provide medical advice.
International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.