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Thanks Dad!

Thanks Dad!

June-21-2020 | Leslie Holland

My dad and my brain go back more than a few decades. When I was two, he convinced my eldest sister she could teach me to read, which I insisted upon in order to move on from coloring books. It wasn’t that I was bored with Dad reading Dr. Seuss to us before bed, it was a fascination with the stories that I wanted MORE.

Among my rather large family—including more than a dozen cousins, with whom our young parents raised more like a collective of siblings—I was given the nickname “The Brain.” I took no offense at the name (until adolescence finally kicked in); rather, I relished reading in a corner when the rest were doing anything else.

It paid off, too. I was immediately admitted to the public school’s advanced program, while my four siblings attended the local parochial school. Dad generally drove us to school and I was the final drop-off, during which time he encouraged my academic achievement in multiple ways, whether quizzing me on spelling words or asking me to solve math problems in my head.

Dad was in advertising, heavily involved in political campaigns, which also set the stage for my career in public relations and marketing—including a stint as a registered lobbyist for the Health Insurance Association of America. As a matter of course, the last three people who hired me asked in the interviews whether I was his daughter. My answer weighed heavily in my favor.

Fast-forward to November 2018… During dinner with my boyfriend, I said something so out of course with our conversation, that Tim was stunned. The next day I had no recollection of it and he insisted I see my internist, who knows me well enough that I was sent immediately for an MRI. Limbic encephalitis was rampant and the obvious diagnosis. (I’ve had epilepsy for nearly 30 years, due to an entirely separate and resolved diagnosis, so all seizure activity was well-controlled, making my memory issues the trigger in my case.)

Upon receiving this new diagnosis, I communicated it to my family. My sister, Suzanne (the one who taught me to read), is now a bioethicist in Washington state, and she arranged for me to be seen at Mayo Clinic for a consult with Dr. Sean Pittock, who agreed out of professional courtesy. Immediately upon meeting me during my office visit, he admitted me and began my steroid treatment.

During this time and since, Suzanne, Dad and I have been in daily text communication. Sometimes it’s related to my encephalitis, though often it’s about our beloved University of Louisville Cardinals, the Chicago Cubs, Thoroughbred racing, or the political antics of the moment. Never has Dad wavered in his commitment to my wellness.

Once it became apparent that working at a job I once loved was no longer possible because of my significant memory issues, he has continued to nudge me along intellectually. He’s convinced “The Brain” will overcome and achieve in new ways. There are days I’m not yet there with his belief, but more often than not, I’m still the kid who’s being quizzed in the car on the way to school.  Happy Father’s Day, Dad!

Terry Holland Leslie Hollands Dad fathers day blog - Thanks Dad!Terry Holland

She Didn’t Stand Alone, She Had Her Father

June-21-2020 | Mari Wagner Davis

 

She did not stand alone, but who stood behind her, the most potent moral force of her life was the love of her father.  Harper Lee.

Father’s Day is a day we celebrate our fathers. We may take them out to dinner, send a card, or make a special phone call. There have likely been times when we have argued or butted heads with our fathers. Times when they have come to our rescue. Times when they have chewed us out for doing something goofy. I didn’t really realize how important my parents, my father is, in my life until I had seizures and was diagnosed with autoimmune encephalitis.

Growing up, my Father’s goal was to make sure we were competent, independent adults. We had to learn to read a map, change our oil, when we were five he helped us open our own bank accounts and made sure we put money in them to save. One thing he couldn’t protect me from or prepare me for was autoimmune encephalitis. But as always, my parents have stood behind me, loving me, supporting me, at times holding me when I cried from the frustration of not being who I was before and celebrating the small goals I have achieved as I have inched along in my recovery.

Events one doesn’t conceive of celebrating such as when I completed day rehab, passed my special driving test so I could resume driving, and when I was able to stay up all day without a nap. (Autoimmune encephalitis makes you celebrate the small things).my Father celebrated with me.

So, when we feel alone, know that whether we still have our Fathers physically with us or not, they stand behind us, cheering us on.

Happy Father’s Day DadMari Davis Father 225x300 - Thanks Dad!Willard Wagner

 

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Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

 

trivia fb 300x251 - Thanks Dad!International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’s ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

 

 

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When Your Brain is on Fire

When Your Brain is on Fire

brain on fire

January-22-2020 | Carolyn Keating, PennNeuroKnow

Imagine you’re a bright twenty-something with a new job and a new relationship.  Everything seems to be going your way until you start becoming paranoid and acting erratically.  Then come the hallucinations and seizures.  You’re admitted to a hospital where you’re (incorrectly) diagnosed with a psychiatric disorder.  You swing from violence into a state of immobility and stupor.  And perhaps even scarier?  You don’t remember any of it.  Sound like a nightmare?  Well, it actually happened to Susannah Calahan, who details her terrifying story first-hand in her 2012 book Brain on Fire: My Month of Madness.

What caused these frightening symptoms?  The answer was a disease that had only been discovered a few years earlier (right here at Penn!): NMDAR encephalitis.  There are four main phases of the disorder.  In the prodromal phase, many but not all patients experience a flu-like illness for up to 3 weeks.  The psychotic phase is accompanied by delusions, auditory and visual hallucinations, depression, paranoia, agitation, and insomnia.  At this stage, most patients are taken to the hospital, where around 40% are misdiagnosed as having a psychiatric disorder like schizophrenia.  As this phase progresses, seizures are very common (although they can occur at any time throughout the illness), as well as involuntary muscle movements like lip-smacking or grimacing, catatonia (muscular rigidity and mental stupor), impaired attention, and memory loss.  The next phase is unresponsiveness, which includes symptoms like the inability to speak, loss of voluntary movement, and sometimes abnormal muscle contractions that cause involuntary writhing movements.  The last phase is the hyperkinetic phase and is characterized by instability of involuntary bodily functions such as breathing, blood pressure, heartbeat, and temperature.  Many patients who breathe too slowly often need to be placed on a ventilator at this stage. The decline to ventilator support can progress very rapidly after several weeks in the psychotic stage, and ultimately patients can be hospitalized for several months with the disease1–3.

What does NMDAR encephalitis actually mean?  This disease is an autoimmune disorder, meaning the body’s immune system mistakenly attacks its own healthy cells.  Normally the body identifies foreign substances by making something called an antibody that recognizes a unique part of the invader, thus targeting it for attack and destruction.  In NMDA encephalitis though, the immune system attacks the brain (that’s where to term encephalitis comes from), specifically a type of neurotransmitter receptor called an NMDA receptor (NMDAR).  These receptors bind the neurotransmitter glutamate, and play an important role in learning, memory, cognition, and behavior.  In fact, the symptoms of NMDAR encephalitis resemble those caused by drugs such as ketamine or PCP that prevent the activation of NMDARs.  For instance, at low doses ketamine and PCP cause paranoia, false perceptions, and impaired attention (like the early stages of NMDAR encephalitis), and at higher doses these drugs cause psychosis, agitation, memory and motor disturbances, and eventually unresponsiveness, catatonia, and coma2.  Several mechanisms have been proposed to explain the symptoms caused by antibodies targeting the NMDAR, but most of the evidence seems to support the idea that the receptors get removed from the cell surface and internalized.  For instance, experiments in the laboratory demonstrate that when animal neurons grown in a dish are exposed to patients’ anti-NMDAR antibodies, the number of NMDARs on the cell surface decreases as the amount of antibodies increase.  When the antibodies are removed, the number of NMDAR receptors on the cell surface returns to baseline within 4 days1.

It’s easy to remove antibodies in a dish, but how do doctors get the body to stop producing antibodies against itself?  Step one is identifying what triggers antibody production in the first case.  Interestingly, NMDAR encephalitis predominantly affects women, and ovarian teratomas (a type of tumor made up of multiple types of tissues, which can include nervous system tissue) are responsible for 50% of cases in young women2.  In patients who have some sort of tumor, removal improves symptoms in 75% of cases.  Interestingly, herpes simplex virus can also cause encephalitis (inflammation of the brain), and about 20% of these patients also develop antibodies against NMDAR2.  Treatment consists of immunotherapy: corticosteroids, IV infusion of immunoglobulins, and/or plasma exchange1, however patients with a viral trigger tend to be less responsive to treatment than those with a teratoma trigger or the 50% of patients with an unknown trigger2.  Once treatments begin improvements in symptoms start within a few weeks, though return to baseline functioning can take up to three years.  Rehabilitation is required for many patients after they leave the hospital.  Deficits in attention, memory, and executive function may linger for years, but luckily over 75% of patients with the disease recover to at or near baseline neurological functioning1.

Doctors and scientists hope to develop new treatments involving immunotherapy combined with small molecules that are able to access the brain to directly combat the effects of anti-NMDAR antibodies, ideally leading to faster control of symptoms and shorter recovery time2.  A brand new animal model of the disease was just described last week that will hopefully lead to more discoveries about how the disease is triggered and potential new therapies4.  And with increased awareness of autoimmune disorders against the brain, doctors will be able to more quickly correctly diagnose patients with this illness and get them the treatment they need.

References:

  1. Venkatesan, A. & Adatia, K. Anti-NMDA-Receptor Encephalitis: From Bench to Clinic. ACS Chem. Neurosci. 8, 2586–2595 (2017).
  2. Dalmau, J. NMDA receptor encephalitis and other antibody-mediated disorders of the synapse: The 2016 Cotzias Lecture. Neurology 87, 2471–2482 (2016).
  3. Dalmau, J. et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol. 7, 1091–1098 (2008).
  4. Jones, B. E. et al. Anti-NMDA receptor encephalitis in mice induced by active immunization with conformationally-stabilized holoreceptors. bioRxiv 467902 (2018). doi:10.1101/467902

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When You Need Help with Your Memory Loss

When You Need Help with Your Memory Loss

January -8-2020 | Mari Wagner Davis, RN

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.

Memory Loss Mari Warger Davis January 2020 500x419 - When You Need Help with Your Memory LossWhat 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.

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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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Through my eyes: Watching my Dad’s AE journey

Through my eyes: Watching my Dad’s AE journey

November-13-2019 | Ryan J Dinero

Ryan J Dinero father died of AE 1 e1573603671514 375x500 - Through my eyes: Watching my Dad’s AE journeyIt’s been a little over two years since I got the phone call from my Mom. I was a sophomore in college and was entirely unprepared for the conversation that was to follow. She explained that my dad had a minor seizure while at work and was being transported via ambulance to the hospital. This news came as a total surprise to me because my dad was in seemingly perfect health – no drinking, no smoking, and he exercised frequently. While I could tell that my mom was obviously shaken, in the moments after that phone call I was able to convince myself that everything was fine, that he would get a prescription and return home the same day unscathed. Like many others who have experienced the grueling battle against autoimmune encephalitis I couldn’t have been more wrong about what was to follow. So began my dad’s battle with the disease.

Its hard to explain to people who haven’t ever heard of AE that it’s not a simple disease to diagnose. In my dad’s case, it took two separate stints in the hospital to finally get an accurate diagnosis. After the first incident he was admitted into the ICU where he lost control of his body almost entirely for several days until the steroid medications began to reduce the swelling in his brain. The neurologists at our local hospital were perplexed as to what the cause of his symptoms could be. They ran a series of tests that ruled out everything from a stroke, a bacterial infection, as well as a multitude of other conditions that I can’t begin to remember. After two weeks in the hospital his facilities began to come back as the medicine did its job, and we stayed hopeful that it was somehow an isolated incident not to be repeated. He was released and began resting at the house as he recovered. It couldn’t have been more than two weeks later that I was woken up by my mom’s screaming in the early hours of the morning. As I ran the stairs I prepared myself for what I was about to see, filled with adrenaline and terror that even two years later keeps me awake in the night. When I reached the living room, I discovered my Dad on the couch having a full-on seizure, something that I had only previously seen in movies. Knowing little to nothing about what strategies to employ to help, I opted to pick up the phone and dial 911, and just as I heard the phone ringing I heard my Dad’s voice from the other room express that the seizure was over and that he felt fine. I hesitantly told the operator that things were fine, spent a few minutes making sure my Dad was responsive and lucid, and somehow returned to sleep. Less than an hour later I was awoken by the same screams, and this time I knew that another hospital visit was imminent. Thankfully, the doctors explained that a small reduction in the seizure medication was to blame and they sent us home that same day.

Over the next month my Dad returned to his normal self slowly but surely. His previous hospital stays were characterized by extremely abnormal behavior that the doctors attributed to his brain swelling. Things that he would have normally never said or done became commonplace while he was in the hospital. He forgot names, places, and other details. After the doctors adjusted his medicine he became more lucid. He was able to laugh at jokes and even bust out some of his own signature humor. While things were obviously different, namely his strength and ability to remain energetic throughout the day, things felt normal. They remained that way until Christmas Day, when another minor seizure sent us to the Houston Medical Center. The hospital was almost completely understaffed and made for a less than ideal celebration of Christmas. This visit was the most serious of the many that we experienced, as we called Houston Methodist our second home for over a month while doctors scrambled to properly diagnose my Dad’s symptoms. The team of neurologists there were incredible given the circumstances and after weeks of uncertainty and guessing, they were able to finally conclude that my Dad was suffering from autoimmune encephalitis caused by an antibody that was unknown.

Ryan J Dinero father died of AE 2 500x333 - Through my eyes: Watching my Dad’s AE journeyFor my family, a diagnosis was everything we had wanted; we could finally begin a treatment plan that was focused, instead of one that had no timeline or endgame in sight. By this time however, my Dad’s health had seriously taken a toll. As a result of losing his ability to walk he was bedridden for most of the month. It was also around this time in the hospital that something seemed to be off with him mentally, he was saying things that weren’t necessarily true and overall had developed a very bad attitude that led to frequent outbursts.

After another lengthy stint at a physical therapy center, Dad was finally able to return home. My mom worked tirelessly with him every day on his occupational therapy, encouraging him and try and stay positive. Things were okay again for a few months, but eventually took a dark turn as my Dad began having suicidal thoughts and began exhibiting symptoms of psychosis, leading him to believe things about the world that weren’t true. He was constantly worried about money and convinced himself that the police were looking for him and had a warrant for his arrest. He left the physical therapy facility in February and in April he attempted to take his life for the first time. Thankfully he was unsuccessful, but he did serious damage to his arm as a result and had to be admitted to a psychiatric hospital for a few weeks and had to undergo more physical therapy for his arm.

It was during his stint in the psychiatric hospital that I first reached out to the folks at the International Autoimmune Encephalitis Society where I received tons of resources about how to get Dad released from the psychiatric unit. Once he was released, it became apparent that IVIG treatments were the right treatment, but we were denied a total of 3 times by our insurance provider on the grounds that the treatment was not FDA approved and did not actually treat AE. Thanks to the hours of phone conversation with members of the IAES, I was able to eventually overturn the decision and Dad began receiving IVIG treatments shortly after. When we returned home, I could tell that he was tired of living, that his spirit was drained, and he was ready to give up.

Despite utilizing every available resource at our disposal, he succeeded in taking his life in late September of 2018, just three days before his 51st birthday.

It’s hard to describe my thoughts and feelings throughout the past two years because the only way I can think of it is as a never-ending roller coaster, constantly up and down with no end in sight, until there finally was one.

Ryan J Dinero Father Johnny 9 20 2018 500x375 - Through my eyes: Watching my Dad’s AE journeyI would be failing to honor my Dad’s legacy if I failed to mention that he was an incredible man, the best man I think I’ll ever have the pleasure of knowing. That said, for me, the experience was agonizing and easily the worst thing I’ve ever had to endure. It felt like some days would never end, and it was exhausting trying to rationalize with someone’s who’s brain would not let them experience reality the way it ought to. The countless hours spent sleeping on uncomfortable hospital furniture, the excruciating hours spent at physical therapy being a cheerleader, and the anxiety of waiting for the doctor to step in the room are just a few poignant memories that come to mind when I think about that period of my life. Some of the happier memories involve performing daily miracles: like making my Dad laugh at a dumb joke or getting him excited enough about The Beatles to get him to sing along in the car.

 

This whole experience has shaped me and impacted me in ways that I cannot begin to describe. While my Dad’s battle with AE ended almost a year ago on September 20th, I continue to wage my own battle every day dealing with the repercussions of this deadly disease. It’s still hard to get out of bed some days because everything is a reminder that I’m here and he isn’t. I can’t help but think about what I could have done different, how I could have made his life a little better than I tried. I think these feelings are natural now that he’s gone. As much as I try to not let myself dwell on them they are always in the back of my mind. The whole-time Dad was sick I was in school three hours away, so many weekends were spent back home at the side of a hospital bed while I struggled through my sophomore and junior years of college. I somehow managed to stay in school and keep my grades up, and I’m looking forward to graduating this coming year.

For the first time in a very long time I can confidently say that I am genuinely happy and hope that by writing a little bit of my story that someone out there, whether it be a caretaker, a friend, a family member, or even someone who hasn’t heard of AE would be encouraged and inspired.

To all the caretakers out there – keep going and don’t let up. Use the resources that IAES has to provide the best care to your loved one. I can confidently say that if it weren’t for this organization my Dad would never have received IVIG treatments, which were instrumental in his recovery.

If you’re reading this, and can relate in any way, I’d love to hear from you about your experience. Much love to everyone.

Ryan

Contact Ryan at ryandinero@icloud.com

 

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Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children’s Hospital

Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children’s Hospital

TCH AE Day 11 242x500 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's HospitalAugust-7-2019 | Sheila Sims

Hello all!

My daughter and I attended the July 27th ‘Day of Strength’ event at Texas Children’s Hospital.  I wanted to share our experience as I hope others will get the opportunity to attend events like this one in the future as well. We were informed about this convention by my daughter’s Neuroimmunologist (Dr. Rohini) as we had been in her office for my daughter’s first visit with her. She informed us that there would be information from experts attending and speaking on Autoimmune Encephalitis. I was intrigued so I immediately went online and booked our tickets.

A little back story about our personal experience with Anti-Nmda Receptor Encephalitis. It all began on February 7, 2019. My daughter had been feeling “not herself” for a couple of weeks. She informed me she could not think straight, she was confused, eye sight was not right (seeing double) and she was exhausted. I made her an appointment with her primary and she was diagnosed with a UTI.

I figured OK, maybe this is a bad one and after a round of antibiotics, she will feel much better. That was not the case. After a couple of trips to the ER after her appointment, things just started to get worse. I made her a second appointment with her primary, as I knew something was not right. The day of her second appointment is when we would witness the scariest times of our lives. As she was getting ready for her appointment, she started making no sense with her words and had no clue about what we were doing.  She didn’t even know where she was.  Then out of nowhere, she collapsed and started seizing.

This was all so completely out of the ordinary for her as she had been healthy her entire life. She was rushed to the hospital by ambulance as she seized again en-route by ambulance to the hospital. When we arrived, they immediately took her for scans and performed a lumbar puncture. They knew after the lumbar puncture, that she was in fact ill, just had no diagnosis just yet. It would be three weeks in the hospital before the diagnosis of Anti-NMDA autoimmune encephalitis was confirmed. She experienced psychosis, hallucinations, clonus, tonic clonic seizures, periods of comatose, and several other symptoms.

After two months hospitalization, needless to say, this is when I decided I will not stop until we have answers. I would not stop looking for information that could be beneficial to my daughter and I knew there were people out there going through this as well. Thankfully, my sister (Dianna Sims) was helping try to find information when she stumbled upon International Autoimmune Encephalitis Society. I will just say, it was God sent! OK, OK, enough about us and back to the day of strength.

TCH AE Day 2 500x243 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's HospitalWe went to this convention, it was our first time attending something like this. My main goal when going was to get better informed by experts and individuals that have walked this walk. We got there a tad early and I do not regret it. When we got there, we sat at a table alone feeling a little awkward and maybe a little out of place. Things soon lightened up as we started to meet more people. The first two people we met where a mother and her 18-year-old daughter from New York. They were just plain out beautiful people. The daughter, we discovered was also fighting anti-NMDAr AE.  My daughter instantly felt that she was not alone in this fight and that there were, in fact, people that could relate to her. That was a hug to my heart. The people we met and all those who attended, caregivers, parents and patients were all struggling in the same way. All of us were fighting for the same cause, walking the same journey and we felt for the first time that we not alone. This was the first time I experienced that we do not have to fight alone. Being in the company of others who we could talk with who related and understood our situation because it was a shared experience.

TCH AE Day 8 145x300 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's Hospital

Nesrin Shaheen

When the convention started, Dr. Muscal spoke first. He spoke about the history of encephalitis and all the new findings, treatments that are available and the hope of a cure one day. He was intriguing and brilliant. He had information that I was glad to receive as I had not seen some of it before. The next presenter was Nesrin Shaheen. She spoke of her daughters’ journey and how they fought for many years before a correct diagnosis was made. She also spoke of some ancient history around encephalitis and had some awesome slides of possible encephalitis in that ERA. If a mother ever wins “Mother of the Year Award”, she would be that mother! She fought, she involved herself and, in the end, her daughter is succeeding well! She is my new role model (next to God, of course! Lol)

TCH AE Day 7 145x300 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's Hospital

Dr. Saxena

Next, Dr. Saxena (Psychiatrist) spoke. She discussed the psychiatric symptoms of Encephalitis. She went over a list of medications to help as well. Not many Psychiatrists are well informed about symptoms and correct psychiatric supportive medications for autoimmune encephalitis but she was! She made perfect sense. The last session we were able to stay for was the “self-care” session. In this session, patients as well as care givers were given a breathing exercise to practice. They also went over a check list that was provided to everyone in the room of different activities that they may be willing to do as to take a minute or two of the day to self-care. Though the patient is the focus, caregivers must also maintain a level of self-care. I think that this was very important as many of us have lost ourselves as caregivers and have forgotten ourselves and what some of our basic needs may be.  This was a real eye opener.

I have to say, I was a little skeptical and nervous going into this whole convention thing but, it really opened my eyes to all the treatments, the people going through the same thing and the possibilities that patients actually have! This is something I absolutely do not regret and look forward to attending many more as we are able.

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My Daughter Has Autoimmune Encephalitis, And Here’s My Regret

My Daughter Has Autoimmune Encephalitis, And Here’s My Regret

June 26-2019 | Cara Arnold

Cara Arnold daughter Gracie 1 - My Daughter Has Autoimmune Encephalitis, And Here’s My RegretMy daughter was born a firecracker. Seven pounds of sugar and spice, with these big, beautiful eyes through which we’d both take in the world. She was brave. Or maybe just innocent. But nothing scared her. And the two sets of stitches she had by her first birthday was proof of that. She loved without bounds, and in return everyone loved her.

She was my first. And I celebrated her firsts.

Her first word, her first tooth and her first steps. Her first birthday, her first gymnastics class and her first school day. Her first awards ceremony, t-ball game and cheer competition. And so, the list goes on.

These firsts were characterized by cheers, often celebrated by many and marked by pictures. Pictures of the moments already frozen in my mind.

These are the firsts a parent looks forward to. The firsts I thought we’d share a lifetime of. The firsts that, unfortunately, chronic illness robbed me of.

As vividly as I remember these “firsts,” I remember a last too.

Her last “good day.”

And I wish with everything I have I’d stopped to enjoy it more. Or, at all.

It had been a long day. And she had taken an extra-long bath, and “forgotten” homework until the last minute, and then chose the longest bedtime story. And we were tired. Or, I was tired. And I rushed through the story. Never looking up at her taking it in. Expecting many more. And I skipped words, and even pages where I thought she wouldn’t notice. And every day since I’ve wished for those words back. Because she awoke in a different world.

The world of autoimmune encephalitis.

A world where her body attacked her brain. Where antibodies meant to fight infection instead attacked her nervous system. A world where her brain was described by doctors as “on fire.” And in this world, she was paralyzed. A girl, my girl, who had been throwing back handsprings the day before now couldn’t move. Gymnastics and softball were replaced by hospital stays and physical therapy and her carefree laughter by shrieks of pain and terror. The fight for homework to be completed or for her to “just go to bed” that had made me bonkers only hours before paled in comparison to this fight – one for her life.

Literally, overnight our world changed.

And again, there were firsts.

Her first seizure, her first hallucination and her first ambulance ride.
Her first EEG, hospital stay, and infusion.
Her first PICC line, feeding tube and port.
Her first wheelchair and walker.

Cara Arnold daughter Gracie 3 - My Daughter Has Autoimmune Encephalitis, And Here’s My RegretThese firsts are also frozen in my mind. They lacked fanfare, for obvious reasons. But the silence that accompanied them meant they lacked support. Support for me, necessary to support her.

And these firsts, cruel though they were, had a purpose. They prepared me for other firsts – like the first time I prayed she’d make it to the hospital or reckoned with the idea from there she may never go home.

And those firsts are the most isolating part of illness.
The part nobody shares.
Because they’re huge. And etched in your mind. But not celebratory.

Gracie is a fighter. I’m quick to say that.
She has good and bad days, and I can voice that.
But, whether I’m protecting her or me; the depth of the bad days has stayed a quieter battle.

Things have stabilized for my girl. She had her first round of chemo. And is now home from the hospital more days than not.

And again, we’re experiencing new firsts.

Her first IEP. Her first partial day of school. And her first time on an “all inclusive” sports league. And I celebrated these moments. Because they were big. They were moments I didn’t know would ever come. But I celebrated them alone – because they aren’t the kind of firsts you can explain.

And the hard part in writing this is I know if they knew I needed them, and if they knew how, my friends would have been by my side. But illness isn’t like that. Nor is “special needs” parenting. There’s no “what to expect when you’re expecting” sort of guide. Because it isn’t what anyone is expecting.

There were firsts I never thought of.Cara Arnold daughter Gracie 5 - My Daughter Has Autoimmune Encephalitis, And Here’s My Regret
And would never want another mama to.
But if I see one experiencing a medical crisis now, I do speak up.
Even if it’s just to say, I’m here,
Because I know illness is scary.
And never meant to be navigated alone.

 

Parenthood, even under normal circumstances takes a village.
A village on the good days – and the bad.
But parenthood with illness REALLY calls for a village.
A village of support, shared resources and shoulders to cry on.

And to the mamas who need a village, reach out.
Because other mamas do too.
I promise.

We’re here… waiting.

 

Your generous Donations allow IAES to continue our important work and saves lives!

Why the zebra 2 - My Daughter Has Autoimmune Encephalitis, And Here’s My Regret

When the judge has read the book…

When the judge has read the book…

May 22, 2019 | Julie Ann Fetch

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Finally, some good news to share with everyone.

I just got a favorable ruling from Social Security Disability that I meet their criteria due to my having anti-NMDAr Encephalitis and other autoimmune conditions.I initially applied in 2015 and after a long battle with appeals and 2 hearings, I won!

Here are my take home messages:

1.     Apply for yourself, have someone do it for you, or apply for your loved one as soon as there is a diagnosis.

2.     Report all medical conditions, not just autoimmune encephalitis. Surprisingly, my case was approved more for my Crohn’s Disease and other autoimmune conditions than the anti-NMDAr, but all of these conditions were complicating each other.

3.     Don’t give up if you are at first denied. Appeal. Hire an attorney that only takes a small percentage and only if you win. I think mine only made $6000 from my case.

4.     Make sure your doctors write in the record the things you tell them about. Like fatigue, confusion, anxiety, depression, slurred speech, vision issues, etc. and give them exact examples of how it affects your everyday life. Better yet, write your list of symptoms out and ask/make them file it in your medical record. Or, track a “typical day” for a week or longer and show it your doctors. 

5.     Have others who live with you or observe you, tell the doctors what they see with their own eyes or ask them to write it down so the doctor can put it in your record.

6.     The biggest thing I learned in this process, is that they don’t award disability based on just a diagnosis. It has to be in your medical record how it is affecting you day to day to the point that you “couldn’t sort pencils” as my attorney always said. As we all know, before encephalitis is properly diagnosed and appropriately treated, “sorting pencils” is probably not even possible. (It still may not even be possible during recovery either for that matter!)

Keep up the good fight.

Oh, and my judge read the book “Brain in Fire”, so awareness is spreading everywhere!

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 International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.


You generous Donations allow IAES to continue our important work and saves lives!

I’ll never have a ‘normal’ Life

I’ll never have a ‘normal’ Life

February 23, 2019 |  Maddy Boehme

Great Expectations: Maddy’s Story 10:43 minutes 

On my 19th birthday, I had an appointment with my doctor. I was a freshman in college, taking three classes a semester. That was all I could handle. 

Every waking day was spent in the clutches of my bully. It weighed me down with constant fatigue and pain like nothing before. It was like my brain had been tossed in a frying pan and seared to a crisp.

I tried to ignore it, push through the pain, pretend as if my body had the capabilities of a normal person, but I’d always crash no matter how desperately I craved a normal life. 

Every night, I hoped to escape my reality in a deep sleep, only to be met with insomnia. I was sure it came straight from the depths of hell. No amount of deep breathing or relaxing music or sedatives ever touched my sleeplessness.

By my 19th birthday, I had been waiting almost three years for a magic pill to get me back to my old, struggle-free self. I had tried several different treatments. Some of them helped but none of them seemed to “fix me.” 

I was hopeful about finding a solution. But, by that point, I should have known that nothing in my life was ever going to turn out how I expected. During the appointment, my doctor said that we had tried every treatment in the book for this disease. I’ll never forget the moment he looked me in the eyes and said, “This is as good as it’s going to get.”

This was not the best gift I’d ever gotten. 

I was crushed as the reality of my disease hit me: I would never have a “normal life” or be my old self again. 

Up until my sophomore year of high school, I got straight As. I ranked fifth in my class. I had fun hanging out with friends. My only worry was what I was going to wear tomorrow or if I was going to get a good grade on that geometry test.

 But then, I started having these weird spells where I would lose the ability to walk and talk. I would cry, uncontrollably, for hours at a time, and I had no idea why I was crying. At first, this happened every couple of months. But as time went on, these spells became more frequent and severe.

While my classmates were out finding dates for the prom or going to high school football games, I was often headed for the ER. It got to the point where most of the hospital staff knew me by name. They’d see me come in and know exactly what to do: load me up with painkillers and sedatives until my body finally quit its mysterious rampant rage. 

The drugs often left me stoned for days. One time, I was admitted to the hospital to be monitored overnight, but I have absolutely no recollection of it. The ER visits eventually became a blur in my doped-up memory as they quickly became my day-to-day reality.

I missed my junior year of high school. Instead, I went to several doctors searching for answers. 

Some of them said these bizarre spells were all in my head. It was just me. After one ER visit, I found myself face-to-face with an inpatient treatment coordinator and was almost admitted to a psychiatric facility. I was often irritable for no reason. Complications from the disease often left me homebound. My closest friend at the time described me as impulsive with a crazy mood and a bad memory. I struggled to keep friends.

 Maddy Boehme Shares her story to spread awareness of Autoimmune Encephalitis

Eventually, I ended up being diagnosed with autoimmune encephalitis, which essentially means that, one day for unknown reasons, my body decided to start attacking my brain. 

Now, I receive infusions every other week to put good cells in my body and make my symptoms less severe. At times, I can be on a lot of steroids, which makes me look like a human marshmallow. My face gets really puffy, and I have really bad munchies, so I’ll be down in the kitchen at 3 a.m. eating five bowls of cereal. I’ve also had chemotherapy to try stop my body from attacking my brain.

I’ve been living with this disease for about five years now. I haven’t been able to take on a full course load since my sophomore year of high school. Residual issues of ADHD, dyslexia, depression and anxiety are my new reality, and I’ve had to relearn how to use my brain. I struggle to live a normal life, but I am lucky to be alive. Most people with this disease end up in psychiatric facilities; they go undiagnosed, fall into a coma and die. I survived.

My life is far from what I expected. I thought high school would be football games and weekends with friends, after-school activities and sports. I thought my college experience would be attending a four-year school far from home, living on my own, doing whatever I wanted, whenever I wanted, meeting boys and making new memories with lifelong friends. 

Life can take a lot of things from you. But I’ve come to appreciate the unexpected and the perspective it’s given me. It’s brought me to places, people and opportunities that I never would have imagined. 

With the help of my teachers, I graduated from high school. And after three years in neurotherapy, I made honor society for the first time in college last month. I was selected as a member of my hospital’s Patient Advisory Council and I’ve been able to give back to the people and place that saved my life. I’ve shared my story with the local newspaper and news stations to raise awareness for this peculiar disease. I even had the opportunity to speak to a classroom of kids at the school I attended growing up. I even get to share my story with all of you.

I’ve made it my goal in life to collect as many experiences as possible. I pierced my nose on a whim, and I’ve dyed my hair various colors of the rainbow. I’ve flown in a helicopter, twice. I lost 25-pounds worth of that steroid marshmallow fluff. I adopted a dog. I modeled in a fashion show. I learned how to play guitar and piano. I traveled to France. And just last week, I got my very first tattoo.

I don’t know what the future holds for my health, so I live for every day that I’m given.

My 19th birthday could have been the worst day of my life. But in that moment of devastation in the doctor’s office, something clicked.

It was on that day I decided to stop waiting around and expecting everything to be “normal” again. I realized life is about letting go of every expectation we have about what life should be. Life is about taking the challenges we’re given and defying expectations.

Support our mission by becoming a card carrying member of International Autoimmune Encephalitis Society. For as little as $20 a year, you can become a ‘Basic’ member.  Your membership includes a small gift of thanks from IAES along with your membership card.

image 5 1 - I'll never have a 'normal' Life

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

The Loneliness of Invisibility

The Loneliness of Invisibility

October 17, 2018 | Diane Davis

Back in my day, diseases were visible.  Of course, we only knew about maybe 20 or 30 of them personally, and were totally oblivious to everything else. Chicken pox at 3 years old – you could see them, scratch them and pull off the scabs scarring yourself for life.  Tonsillitis – your throat hurt and swelled and turned red and you couldn’t eat a thing.  Mumps – oh I remember when my sister had them.  She was sick and looked just like a chipmunk.  A few years later in Junior High and High School kids were dropping right and left with appendicitis, dislocated body parts from sports injuries, and mono.

These illnesses were things we could observe, identify and find accessible treatment for. They were common.  Everyone knew about them.  Tea and sympathy were generally available from family and friends (except for the mono jokes) and even teachers, who would send home assignments along with nice little notes to the patient.  So, it was crummy to be sick, no one liked it, but you knew it would pass and, in the meantime, most people, including doctors, treated us all fairly well.

Imagine my surprise and dismay when at age 47 I became so ill I couldn’t function most days.  My throat wasn’t sore, I had no rash, and nothing appeared broken. But I had terrible headaches, my vision became increasingly strange, even to the point of seeing things no one else saw,  and body pain was unrelenting.   I lived in a black hole of depression.  My wonderful job became impossible to do because my memory only worked well occasionally.

I went on disability and started a 15 year journey looking for a diagnosis, getting sicker along the way, rebounding enough now and then to think “Aha!” it’s over, only to crash again and move deeper into depression and hopelessness and a loneliness I’d never experienced before.  The invisible illness of Autoimmune Encephalitis had me in its grips and no one had a clue.

To have an invisible disease like AE is to be very lonely. What you had, in many cases, is just gone – standard of living, often relationships, and most certainly who you seemed to be. One physician after another puts forth a theory and gives you medicine which makes you sick, then tries another theory and the same thing happens. The doctor may become frustrated and turn it back on you, the hysterical woman or hypochondriacal man. If you’re a child it all might be blamed on your mother’s Munchausen Syndrome.

Meanwhile you get sicker and sicker. I was dumped in the psych unit twice because the medicines I’d been given made me crazy. Five neurologists thought I was just nuts, or a complainer.  Other specialists just threw up their hands, and several were even kind and sympathetic in their helplessness. I got a new PCP and sobbed through yet another horrible history tale. She was silent when I finished, and I just sat there. Loneliness.

 She finally took my hand and said softly, but with conviction, “Diane, you are not crazy. Something is badly wrong, and I don’t know what it is, but we are going to find out if I have to send you to every major hospital in the country. The most healing words I’ve ever heard.  I still cry when I remember that moment.

That was in 2012 and Autoimmune Encephalitis was only identified in 2007. My wonderful new Cleveland Clinic neurologist told me autoimmune encephalitis was rare and that the type of antibody I have is also rare.  He explained that the course of the disease was progressive, and remitting-relapsing.  I don’t know how much of that I understood at the time.  I was just so happy to have a name for it that I hugged my doctor as I left.  Weird to be thrilled to have a life-threatening disease.

If you are an AE Warrior, or the friend, parent, family member or caregiver of one, I know you understand the loneliness of invisible illness. Loneliness with a capital “L”. When well-meaning people say “Oh, great, you had your IVIG Friday, you must be feeling great!” or “Cheer up! It can’t be that bad.” “You’ve still have your husband/wife and your kids”, “All of us forget things from time to time.”, “Go to a yoga class and your balance will be back in no time.”, or if the patient is a child, I once heard, “She’s young and kids bounce back from things.” ……” and so on. All meant to be well meaning comments.

LONELINESS hits you right in the heart. Whether it’s being said to you or to the people who love and care for you, it makes hanging in there and struggling toward recovery so much harder.

 That’s why the International Autoimmune Encephalitis Society is so important to me. The support, love and education it provides keeps me hopeful and the friendships I have developed help with that Loneliness.  I understand that people in my life mean well, but their comments injure me over and over because they just don’t get it. Invisible illness is everywhere.  We have one version of it and know the terrible costs it extracts. We understand how critical it is that we use every moment as a teachable moment to help all those other folks out there understand what Autoimmune Encephalitis is and how much we need their support.

IAES is there for us.  If you are at all able to help with the growing number of very frightened, LONELY people navigating autoimmune encephalitis, please contact IAES about volunteer opportunities.


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Through My Struggle came Tremendous Strength. Never Give Up!

Through My Struggle came Tremendous Strength. Never Give Up!

December 5, 2018 | Colleen O’Neal

 

Six years ago, I couldn’t turn on the faucet

I distinctly remember standing in front of the sink, wanting a drink of water and not being able to turn on the faucet. I could certainly reach it, and the faucet was functional, but I still failed to turn it on. I stood staring at it trying to make the connection between the long metal spout and the glass in my hand. I have no idea how long I stood there, but eventually, I made my way back to bed only to have a startling and terrifying moment of clarity about what had just happened.

Six years ago, I spent three months in bed

In between doctors’ appointments, tests, more tests, and more doctors’ appointments, I continued to deteriorate. I was unable to function due to the dizziness and unable to walk without assistance. I could only stand for short periods, and any exertion exponentially rose my blood pressure to dangerous levels. My numbness extended to parts of my arms, legs, and shoulder blades. I had strange sensations of water in my scalp, and my pupils were in a constant state of dilation. I would regularly feel like my skin was on fire and would sweat profusely with no warning. Continued trips to the ER yielded nothing more than a diagnosis of an ear infection or a virus. They weren’t listening, and I was dying. A subsequent MRI showed two benign cysts in my brain. One in the left ventricle and one at the base of my eustachian tube. Despite all of my symptoms, the doctors were convinced the cyst in my eustachian tube was the cause for all of my symptoms and surgery would be scheduled in two weeks. The trips to the ER had become fruitless, as the doctors felt they had their working diagnosis. We were alone; forced to wait it out. In those two weeks, my naps moved from a couple of hours to a half a day, to sixteen or more hours a day, only to be awoken, gasping for air. My husband, not wanting to disturb my rest, would sleep in the guest bedroom but would hesitate at my closed bedroom door in the morning not knowing, when he opened it if I would be alive.

Following the surgery, I felt much better. In retrospect, it was the steroids I had been administered before the surgery. Two days later I plummeted hard, and the search began again.

Six years ago, a doctor called me a liar

One of the most frustrating aspects of this disorder is the quickness of the medical community to assume it’s a mental issue and throw Xanax around like a party favor. If you don’t fit into a nice, neat box, you must be crazy or a liar and ultimately your dismissed. I spent days and days in the hospital only to be released with a “cookie cutter” diagnosis or none at all. I’ve been accused of trying to get disability and basically told I was stressed so go home “little, feeble women” and bake a cake for your husband. When I visited yet another neurologist, I questioned her diagnosis of migraines. She leaned into me, lowered her voice to a whisper, pointed to herself and said in an extremely condescending voice, “I went to school.”

Six years ago, I looked ok

Looking “ok” on the outside doesn’t mean things are ok on the inside. This was and still is a difficult concept for many to understand, and those who suffer from a variety of autoimmune diseases deal with this daily.  Although I was able to recover some, for three years I suffered from a plethora of symptoms including widespread pain, dizziness, weakness, verbal issues, numbness, confusion, comprehension difficulties, vision changes, and a constant “flu-like” state. This was worsened by feelings of hopelessness.  Without a proper diagnosis, I started to think the doctors were right and I was crazy. Many members of my family never said it, but I know they were thinking the same thing. Many co-workers, and especially my supervisor, began to treat me like I had done something wrong. In their eyes, I was the lump trying to beat the system. They only spoke to me when it was absolutely necessary and did their best to exclude me from anything that could help forward my career. I was the one that everybody whispered about. I suffered in silence and struggled through every day never letting anyone know how I felt, lest they use it against me.

Four years ago, it was time for a change

By this time, I was convinced that no one other than my husband and children were going to advocate for me. However, it impacted us all, and we all felt helpless. I had been to every local neurologist, only to be rejected for further treatment because I dared to question them and refused to be dismissed. My primary physician was very sympathetic but, without a referral to a neurologist, her hands were tied. Therefore, I began to research my symptoms at every opportunity. I was dedicated to determining what was destroying my mind and body. I began to realize that I wouldn’t be able to continue in my current, very physical profession if my symptoms didn’t improve, or worse, if I began to backslide to where I was two years earlier. I was already hiding symptoms from my supervisor at work for fear of reprisal. I would claim something benign like a dentist or eye appointment so I could go home and attempt to scream away the pain. At the office, I would wait for the hallway to clear before leaving my office so no one would see the wobble in my walk as I tried to maintain my balance, or see the deep furrow in my brow as I tried to combat the double vision.

Before I got sick, I had decided I was going to work on my degree but was only one year into the process.  I didn’t necessarily need the degree in my current position, but I wanted it as a personal accomplishment for myself. Now it had turned into a necessity. Without a diagnosis, there would be no cure. Without a cure, I had no idea how long I could keep my job. It was, without a doubt, time to broaden my possibilities but how was I going to do this if I couldn’t hold a decent conversation or remember what I had just done the hour before?

Two Years Ago, I Got a Diagnosis

For months, I went down every rabbit hole imaginable trying to discover what this was, but kept running into dead ends. Then, one day I came across Hashimoto’s encephalopathy. Oh my God- this was it! Every symptom fit. The stroke-like symptoms, the cognitive impairment, the psychiatric symptoms, the tremors and so much more. I printed out a stack of information and drove to my doctors’ office with a renewed sense of purpose. She agreed it was a distinct possibility but still ran into dead ends when referring me to the any of the local neurologists. Not to be deterred and armed with new ammunition, I began to research facilities that specialized in this disorder and found one 350 miles away. The referral went in, and within a couple of weeks, I received a call for an appointment.

My first appointment lasted over two hours consisting of neurological exams, psychological exams, physical exams, and a multitude of questions. In the end, my neurologist said, “I’m not sure yet what this is, but we’re going to figure it out together.” Together? That meant I had a voice! All I could do was cry. I wasn’t dismissed, I didn’t get the “eye roll,” I didn’t get a cookie cutter diagnosis, and most importantly, I was believed!

I was admitted into the hospital for three days, placed on IV steroids and underwent more tests, including an MRI, spinal tap and a multitude of blood work. Subsequently, I was diagnosed with Steroid Responsive Autoimmune Encephalopathy and placed on immunosuppressants and other stabilizing medications. I was on my way. There was a path, and I had hope!

May 2018, I Graduated

Due to the nature of my job, I never knew where I might be or for how long so all of my classes had to be online. This, in itself, was already challenging. I figured out rather quickly that my brain didn’t function very well in the evening. Within 30 minutes of computer work, I was already having to read over what I just read several times and 30 more minutes brought on the double vision. The process of reading, comprehending, and delivering a term paper was nothing less than agonizing while I waited for my brain to wake up. It was like being in a constant dream state while your awake but you have to get the job done while looking through the fog and walking past the monsters.  Add to this severe headaches, concentration and cognitive issues, and my already challenging effort became a monumental hot mess! I had to formulate a plan that I could live with that could balance my work and school.

Treat it like a job. That was my plan. It couldn’t be an afterthought or when I thought I had time, it had to be scheduled. If my brain didn’t work at 5 pm, then my schedule would begin at 4 am. So, every morning thereafter began at 4 am with a cup of coffee and a book.

As with any job, you look for ways to improve. If I was going to treat my disease like a job, I had to find ways to improve my circumstances. One of the things I struggled with daily was unrelenting pain and had read that exercise helped. I wasn’t sure how trading muscle pain for nerve pain would work, but I was willing to give it a try, and I’m glad I did. Just the act of stretching gave immediate pain relief. I hired a trainer to help with balance and strength and continued to see improvements daily.

Six years ago, I couldn’t turn on a faucet, but there I stood, having refused to give up, standing side by side with my fellow graduates and receiving the distinction of Magna cum Laude.

 

I still have “those” days, and much of life is still a struggle. However, I chose to work around and work through rather than let this disease win. I chose not to be intimidated by arrogant doctors and to ask the tough questions. I chose to take charge of my health and to be my own best advocate.

The last six years have been a tremendous struggle, but I wouldn’t change a thing. With my family beside me, it showed me a strength in myself I never imagined. Now, with a deep understanding of this disease, I can advocate for others and be the voice for those who have none.

Six years ago, this disease changed my life forever but through struggle came tremendous strength. Don’t let your “faucet” be your end but rather your beginning. Turn your struggle into strength and never, never, ever give up.

 


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Meet the IAES Admins ~ Series Introducing Jo-Anne Villar

Meet the IAES Admins ~ Series Introducing Jo-Anne Villar

November 6, 2018 | Jo-Anne Villar

 

Jo-Anne Villar with her daughter Jordan

Each month the IAES Blog is featuring one of our volunteer Administrators working in the IAES Educational Facebook Support Group.  The educational support forum is specifically designed for people who have received a confirmed diagnosis of Autoimmune Encephalitis, their loved ones and caregivers.  It is the only educational support group of its kind.  Members receive one on one support, educational training in AE based on the research published in the field by top experts, advocacy in addressing their specific challenges or road blocks to reach the best treatment plan and outcome, emotional and personal support by members of our ‘AE Family’ who walk this walk.

Each Blog in the series will introduce you to one of our Admins and tell you a little bit about what they do in the group and what they do and are responsible for “behind the scenes”.  Some of our Admins work full time and contribute 7 days a week while others donate their time and talents a few hours a day or as they can.  The roles they hold are diverse from talking to each individual who asks to join the support group to answering posted questions, helping members understand or locate research on a specific topic, working with insurance coverage/financial discounted programs/denials of treatment to crisis management in varying situations. Some take on additional hats writing and editing blogs and THE HERD newsletter where we bring you up to date news.  An Admin may assist members privately which can involve a team of Admin being assigned to a case that can at times run weeks or months until resolved.  Each Admin brings their own talents and viewpoints to the team.  If you think you would like to become an admin e-mail admin@autoimmuneencephalitis.net to request an application.

This month we are spotlighting Jo-Anne Villar


I am a mom of a now 15 year old daughter Jordan, who has been battling Autoimmune Encephalitis for at least 3 years. I think I’m like most moms of children with AE, we joined IAES group, to be able to learn, share, and connect with others. We want to feel that we are not alone. I joined IAES around 2015 in my frantic search to figure out for myself what was happening to my daughter.

I now volunteer for IAES helping guide and comfort members that are dealing with AE themselves or caring for someone who is. I share research pertaining to their circumstance, or my experience from my daughter’s journey, or comfort and try to help them find strength.

 

I am a mom to 5 kids that my husband and I are raising. We have a full house with his two sons (11 and 17), my son (16)and daughter (15) and our 8 year old daughter. I’m a wife to a dedicated husband for over a year now, but we have lived as a family for 11 years. We have a very busy household like most with 7 members. We all help care for each other, especially caring for Jordan. To my amazement, we developed a protocol when she has an emergency. I realized one day that they all know what to do in an emergency. When a seizure occurs one will alert, another turn her to her side and keep her safe, another will get her medicine bag, another will time, another will have a phone ready to call 911. Even my 8 year old has been helping since she was six. I am Business Office Manager and Insurance Biller for a skilled nursing and rehab facility. I am determined that every patient should understand their condition, their treatment, and their insurance coverage. I advice patients of the services they are getting in the nursing home and explain the extent of their coverage and their financial responsibility. I also communicate with patient insurance companies to make sure that the covered services we provide are authorized and paid for. I care that our patients get the services they need. I care that our patients know what their insurance will cover. I care that the insurance will pay for what they authorize.

I have been a patient advocate for over 20 years. It has definitely helped me advocate for my daughter and my family. My profession has given me the strength and experience to be a case manager for my family. I was a case manager and caregiver for my mother in law when she battled breast cancer. I was a case manager and caregiver for my mother when she battled leiomyosarcoma. Now, I am my daughter’s caregiver and case manager. I truly believe that our experiences lead us to become who we are meant to be.

 Jordan feeling at her better 6 weeks after Rituxan treatment.  She did have a seizure 2 days before this picture was taken, but then was seizure free for 3 months.  Jordan has been battling her AE for 3 years. 


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Why I Am So Thankful this Thanksgiving ~Sydni’s Story

Why I Am So Thankful this Thanksgiving ~Sydni’s Story

 

November 14, 2018 | Jamie Dobson

I was asked to share my daughter’s story.  I’m not much of a writer, but I thought that I would give it a try.  Sydni is a 16 year old who dreams of being a paramedic.  She has always been the one that is willing to help and has such a compassionate heart, so no one that knows her is surprised by this.  She is the fourth of seven kids, 2 boys and 5 girls.  She was a full term, scheduled C-section with no complications.  She was the smallest of all 7 kids, but was healthy.  When she was 3, we noticed that sometimes, her pupils were different sizes.  Not just a little different, sometimes very different.  We took her to the pediatrician, and they referred us to a pediatric ophthalmologist.  He couldn’t find anything physically wrong, so he wanted to follow up in a few months to see if there were any changes.  A couple of weeks later, I was called home from work because she was saying that she couldn’t see.  By the time that I got home, she was able to see some, but not very well.  We took her back to the ophthalmologist that day.  He ordered CT scans of her head and abdomen.  When everything came back normal, he referred us to a neurologist.  When we saw the neurologist, he made me feel better about everything.  He assured us that everything was okay, “We see this all of the time, she will outgrow it”.

Fast forward a few months.  One night, Sydni started complaining that her chest was hurting.  When we went to the pediatrician, they said based on her history, let’s send her to a cardiologist. Again, “we see this all of the time, she will outgrow it”.  I felt a little better after hearing it this time, but not much.  Her diagnosis was Postural Orthostatic Tachycardia Syndrome, or POTS.  We were told that this usually isn’t seen until the early teens, but she would outgrow it.  Treatment was to increase water and salt intake.

After a few more months and several more trips to see Dr. Steve (our pediatrician) for a variety of things, he was able to give us a diagnosis.  Dysautonomia.  I have never heard of Dysautonomia!  Twelve years ago, there wasn’t much to be found about Dysautonomia.  I couldn’t find much about it on the internet, but I did find one website that had a lot of information.  It was the Dysautonomia Youth Network of America .  Of the 30+ symptoms that they list on the website, Sydni had all but a few.  It wasn’t a good diagnosis, but at least we found out what was going on.  For the most part, she learned how to deal with things on her own.  For example, she has thermoregulatory issues, so she struggles with maintaining her body temperature.  She doesn’t sweat to cool herself.  She learned to stop playing and find a cool place when she needed to.

Dr. Steve contacted Vanderbilt to try to get her into a study that they we doing.  Since this wasn’t usually seen until the teens, she was only 4, they said that she was too young and wouldn’t accept her.  She started seeing several specialists, and lots of visits to the pediatrician.  Dr. Steve is like family now!  Sydni has grown up learning how to live with her condition; it hasn’t held her back in too many ways.  Some days, it has been obvious how bad she was feeling, but she still managed to keep a smile on her face.

Fast forward again to Sunday, February 12, 2017.  The kids spend every other weekend with their Mom.  This was her weekend.  I picked them up from their Mom’s and took them home.  After getting the little guys to bed, Sydni and I went to the store (my oldest son and second oldest daughter were there).  After we left the grocery store, we went to Walmart.  Sydni needed some things for school.  As we were walking across the parking lot, she was telling me what she needed.  When we got inside, she looked at me and said, “Why are we here”?  I thought that she was teasing me, so I said, “You know why we are here”.  Her expression changed and she asked, “What did we come to get?”, and then she started crying.  That is when I knew she wasn’t teasing.  We left Walmart and headed for the hospital.  Home was between us and the hospital, so I called the older kids at home and told them to meet me in the driveway.  I talked to Sydni all of the way home and it was obvious that something was wrong.  When we got to the house, she didn’t recognize her siblings.  She was admitted when we got to the hospital.  After X-rays, CT Scans, an MRI, lumbar puncture and tons of blood work, it was determined that she had a conversion disorder and started seeing a Psychologist in house. 

I had never heard that term, but I wasn’t convinced.  Her memory hadn’t returned and was much worse than we initially thought.  She couldn’t remember holidays, vacations, people, events, etc.  She spent a total of 5 days in the hospital.  A few days after discharge, I received a call from the neurologist’s office.  Some of the labs came back and he had a new diagnosis, Hashimoto’s Encephalopathy (HE).  One of my other daughters has Hashimoto’s Disease (hypothyroidism), so I’m thinking, okay, we can deal with this, take some thyroid medicine and she will be okay.  It turns out, I thought wrong.  The neurologist said that it is also referred to as steroid responsive encephalopathy and prescribed steroids.  Sixty mg of Prednisone.  Almost immediately, she started feeling better.   After being on the Prednisone for several days, her dose was tapered.  After only a couple of days at the lower dose, we were back at the hospital with the worse head pain that she has ever had.  She has been dealing with migraines since she was 4.  Sometimes these would keep her in bed for a day or so, but this was not like any other headache.  The pain radiated down the back of her neck.  After several rounds of the migraine cocktail, she was admitted.  She spent several days in the hospital, getting the pain under control.  By the time that she was finished with the Prednisone, she was back in the hospital.  This time, the pain was worse than the time before.  While she was in the hospital this time, the neurologist started her on 1,000 mg of solumedrol via IV.  She received infusions 3 days in a row while inpatient.  She was prescribed a 12 week course of infusions as an outpatient.  After only a couple of weeks, due to her immune system being suppressed from the steroids, she ended up admitted in the hospital with the flu.  This is how Sydni spent her summer.  In and out of the hospital, 13 times between February and September. 

During the summer, she started having new and worsening symptoms. Each time that she was in the hospital, they had a more and more difficult time starting an IV.  One visit took 8 attempts.  One of her infusions had to be run between the index and middle fingers on her right hand.  Around July, she started having some joint issues.  Her hips would dislocate, then her shoulders would dislocate.  Now all of her joints, including her jaw will dislocate.  In August, she started throwing up almost daily.  In September, she had 2 seizures.  By August, there was nothing more that they could do for her head pain.  The last time that she was admitted to the hospital, she received 5 rounds of Propofol with no relief.  The next time that we went to the ER, they sent her home and said that there was nothing else that they could do to help her head pain.

By this time, Sydni was saying that she didn’t believe that it was HE.  She believed that it was Dysautonomia.  On our follow up visits with Dr. Steve, he agreed.

The neurologist gave her a referral to the Mayo Clinic in Rochester Minnesota.  After 2 full weeks, lots of doctors and labs, the HE was ruled out.  The answer was that this is “not of organic ideology”.  They recommended that I bring her to a 3 week outpatient program that they have for pain management.  By the time that we got back from Minnesota, Sydni had lost 30 pounds.  Dr. Steve was more convinced of the Dysautonomia.  He sent her to see a GI doctor to see why she couldn’t keep food down.  Another diagnosis, gastro paresis.

Sydni had continued to the psychologist through all of this.  She agreed that a pain management program would help and gave her a referral to the FIRST Program at Cincinnati Children’s Hospital.  When we went for her evaluation, we were there for several hours and met with several different doctors.  She was accepted into the FIRST Program and spent 4 weeks in patient at Cincinnati Children’s Hospital.  The program taught her how to live with the pain that she deals with daily.

72f61a 3ec97e11d82c4f70abc43fd92e0d3c71 mv2 - Why I Am So Thankful this Thanksgiving ~Sydni's Story

She still struggles a lot, but is returning to her old self.  She has now been diagnosed with several things.  I will try to list as many as I can remember:  Dysautonomia, Ehlers Danlos Syndrome, POTS, Vasomotor Instability, Chronic Pain, Chronic Fatigue, Amplified Musculoskeletal Pain Syndrome, Gastro Paresis,

Through all of this, Sydni still always has a smile on her face.  Even when she feels her worst, she is still the first one to help someone.  I am optimistic that she will continue to get stronger and will reach her goal of being a paramedic.  She did a lot of physical therapy at the FIRST Program and learned a lot of exercises to help with her joints.  She does them daily and is learning how to eat to help with the gastro paresis.  Sydni just turned 17 and has now returned to school (after not being able to attend for 19 months) and has started socializing with her friends again.  She is an amazing kid.  She inspires me every day.

One thing that I have learned through all of this is to advocate for my kiddos.  I have done a lot of research and have learned to question the doctors when I didn’t agree or didn’t understand.  Another thing that I have learned is the value of a doctor that listens to you and is willing to do whatever he can to help your kid, and to help you to help your kid (thanks Dr. Steve!).

~ I’d like to extend my thanks to International Autoimmune Encephalitis Society for the guidance and advocacy they gave me throughout this difficult year.  IAES has helped me more than they will ever know.   Based on what IAES has done for me, I am sure that there are countless others who would say the same thing.  Their passion for helping others is obvious. I don’t know what else I could ever say but thank you.  IAES is a hero to a lot of people!


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Never Give Up! Just Keep Going

Never Give Up! Just Keep Going

 

October 31, 2018 | Kim Kennedy-Raley, RN

Hi everyone, my name is Kim Raley and I was diagnosed with Hashimoto’s Encephalitis in July of 2018 although my symptoms were present for years before diagnosis. I am 53 years old, I love the Lord, I’m a parent to 3 children and now have 6 grandchildren. I am a registered nurse and have been for 20 years. I worked in a rural hospital as a Charge Nurse on medical surgical floor that had patients from 3 days old to my oldest patient being 106. I had spent my life taking care of patients with every disease and condition within all ages of life. That’s what I did, that’s who I was.

Boy was life fixing to change for me. In my later 40’s I started having an odd array of symptoms of anxiety, severe fatigue, joint pain and swelling and cognitive problems that took an intermittent course. Well, I would go to the Doctor and tell him a new symptom, he would do blood work which would come back normal. So, he would treat the symptom. He would tell me I was working too much, that I needed to get rid of stress in my life, work out and I was getting older, so things were not going to feel the same as when I was younger. As a nurse, 12-hour shifts would turn into 14, patient nurse ratio was high and by now I was in my later 40’s so with the ole brain not working as well as it did I thought I was going through menopause. My life went on and I kept going.

During the Summer of 2015 I was coming out of the town court house that I have spent my life in and when I walked outside I didn’t know where I was. I knew I was in my town on my town square, but I could not connect my thoughts. I walked around that square looking at buildings that I had seen my whole life and they didn’t make sense. I was terrified. I finally made it to my car and drove home crying all the way. Something had happened to me and I didn’t know what. I called my daughters and they came over and I was fine at that point, so I brushed it off, but it always stayed in the back of my mind and I would tell the physicians I worked with about it and they would say I just had too many things on my mind. Too much on my plate. So here I went again doing my thing.

In January of 2015 I got an upper respiratory infection and was treated with antibiotics. Two weeks later I discovered that I had lost the hearing in my right ear. I went to ENT and was diagnosed with sudden deafness. I had missed the window of time where treating with steroids could help. I was told that there was a 50/50 chance my hearing would return. I was shocked. The treating doctor told me to google it to find out more. Over that Summer my hearing did seem to improve somewhat. The ringing in my ear had subsided. So, I simply picked up and carried on with life again.

In March of 2016 I got strep and flu b at the same time and was very sick for several weeks. Then about the time I thought I was over that I was at work and, suddenly, I started having severe vertigo attacks. I ended up in the hospital on 2 separate occasions, but I continued to work as soon as I would get relief until the day when no relief came. Again, I was at work and my world turned upside down and I lost the hearing in my right ear completely. I was sent to ENT again and was subsequently diagnosed with Meniere’s Disease and underwent a chemical labrythecotomy over the next few months to destroy my vestibular nerve to stop the vertigo. I spent much of my time so sick in bed at this time I couldn’t even think. When the vertigo subsided I then had to deal with relearning balance, adjusting to bouncing vision and my brain just would not cooperate. I asked the ENT for physical therapy to help me walk again and he said that he wouldn’t give me that as he wouldn’t be following my care. I was shocked. If he wasn’t following my care, then who was? I turned to my family Doctor for help and he ordered vestibular therapy. During that summer I walked on trails, hiked on uneven ground and just did everything I could to regain my strength and balance.

By this time, I was no longer working.  I had to navigate the disability system and come to terms with the idea that I may never be the same as I was prior to my illness. My life was forever changed but I didn’t realize how much until Sept of 2016. Over a period of weeks my brain decided it wasn’t going to work for me. I had difficulty with speech, I couldn’t carry on a fluid conversation, I could not complete a task I started.  Attempting to try to organize 12 pieces of paper for my Doctor took me an hour and a half to no avail. I had an appointment scheduled to see my primary Doctor for this and waited for a month and a half just to be told in his waiting room that because I no longer had my own insurance and was now on state insurance he would not be seeing me. At this point I already had convinced myself that I was crazy, and I was so desperate because I knew I really wasn’t. There was something wrong with me and I was going to die if someone didn’t do something.  I stood my ground and I refused to leave his office. I told the staff that someone was going to see me that day or come out and tell me to my face that after all of these years, when I was really sick, the doctor was not going to see me.  I was told that I could come back in 2 hours and see the nurse practitioner.  I was so shocked and disappointed, and I couldn’t believe that people would treat their patients like that.  I know I was hysterical in his office and now all I can do is laugh about it.  I think back on that day and what a site I was! But I was going to be seen!  So, the nurse practitioner referred me to a neurologist which took another month.  I had EEG, MRI, CT ultrasound of thyroid and lab work and barely made it to the day that I would see him to get the results.

Well the Circus continued. My daughter who is a clinical psychologist went with me to this appointment for which we waited 4 hours to be seen and the neurologist came in and gave me a short memory exam and then asked me how long had I been having problems with my memory.  I looked at my daughter and then he lifted his hand and said, ” This is an easy question”,  and started ticking off his fingers while saying, 10 years, nine years, eight years, etc., until he got down to months. I thought it was some kind of memory test or that he was insane.  I looked at my daughter again and she shrugged her shoulders and bowed her head as if to say,  ‘I’m with you!’.  I finally blurted out 10 years just to make him stop! Now remember, my brains not working my ears are ringing, my vision is bobbing, and I was having terrible flooding from the MRI sounds I had just previously done! It was bananas! I asked him what my labs showed and told him about the Meniere’s and he yelled!  “It is not Meniere’s”!  So, I said OK then what did he think. He said my TPO was elevated and I had thyroiditis and he thought I had Hashimoto’s Encephalitis. I asked him about my MRI results and he said come with me and I’ll show you! He took me out to the desk and told the receptionist to make me an appointment for a neurologist in Louisville and make sure I had a copy of the disc to take with me. Then he turned to me and said, we are done you may go. He stuck his head in to the room where my daughter was and said you can go now. It was like we were on candid camera waiting for the guy to jump out and say it! Unfortunately, we were not and that was it.

Well, we cried and cried the whole hour home and instead of taking me home my daughter drove me to her Drs office and told me we were going in! I said no I can’t, I can’t hardly walk.  I was so fatigued I could barely talk.  I just wanted to go home and go to sleep. She said you’re not and in we went. After seeing his scheduled patients, he walked into the waiting room; having not seen me for several months he was shocked. I worked with him on the floor at my hospital and he couldn’t believe the shape I was in. He said; You have something, and we are going to try this. He wrote me a prescription for prednisone 50 mgs and made me an appointment for the next week. I took 2 doses of the steroids and by the third day my mind was back, I could walk with little problem and I could bend over in the bathtub and wash my own hair! I could only cry for days! I knew I was trapped in this body with this brain that wasn’t working but I sure didn’t know how far I had gone down until the prednisone kicked in! It was a miracle.

I made it to the appointment with my daughter’s Doctor (who has sense became my Doctor), and made an appointment with a new neurologist in a new town.  I was ready to go! I continued the steroids and went to the appointment. We were ready to find out what it was! I had all my medical records, meds list, labs history and physicals, imaging discs. Literally, everything! Every instance, test and diagnosis that lead up to this point was going to mean something. After going over my medical history,  he got out my MRI and said even though it showed only white matter changes that he could see frontal lobe shrinkage and that I had frontotemporal dementia. That is a death sentence within 2 to 5 years and he recommended that I get my affairs in order.  His recommendation was that he refer me to Mayo Clinic to get the best care.   I was horrified but this time I knew he was wrong! Steroids would have not made that big of a difference in that short of a time.   If indeed it was frontotemporal dementia. 

I didn’t freak out, unlike my daughter. I was numb but processing. The office was going to call me with the appointment at Mayo and we would go from there. In the meantime, the doctor scheduled me for a neuropsych evaluation. We called the office, a week later, and were told they had left a message with yet another physician who would do the neuro psyche testing. But they had not heard back. So, I waited another week and called the office again, only to be told they had sent another message but still hadn’t heard back. Then, I ask them for the name and number of the Dr stating I would try to get in touch with them myself. As it turned out the number they gave me was someone’s home address and this sweet little man said “Miss, I don’t know who keeps giving out my number, but there is no one here by that name. This is my home.” I thanked him and called the office to let them know. Their response: “Well, that’s why no one ever called us back.” Needless to say, we were on the search for our own neuropsych tester, and in the process, found out the original Doctor they were trying to schedule an appointment with had retired a month prior. The neurologist’s office did let me know, yet another month later, that Mayo would not except “Passport,” as it was state insurance. However, they did schedule an appointment for me with a neurologist at University of Kentucky.  I continued daily oral steroids until I saw him.

I arrived for my initial consult with him armed with all my medical records including my recent neuropsych evaluation.  He diagnosed me with Hashimoto’s Encephalopathy and set me up with Rheumatology at University of Kentucky. They adjusted my steroids and placed me on Imuran with the assurance that if this did not work then we would move to Cellcept or IVIG.

I have just finished a month of 60 mgs of prednisone daily and a month of an increased dose of 150mg of Imuran.   I will continue to see if it works. They are going to taper me slowly off prednisone once the Imuran has time to take effect at the full dose.

I still struggle day to day with brain fog, ringing in my ears, and sensory overload, but I am learning how to live with this disease and except its challenges. And, I am trying to find the good in this. It has allowed me to reestablish who I am, and I have a lot more time to spend with God who is my strength. I take it day by day and, so far, I have had just enough Grace for every day. I am hopeful yet realistic in that this is a long row to hoe not a short one.   The lessons I have learned that I would like to share and can’t express their importance enough are:  Gather your medical information together.   Rely on family support.   Follow your instincts.  Be your own advocate.   Make your own doctor appointments and always request to be placed on their cancellation list.  Most importantly:  Never give up! There will be a day  when patients will not have to fight like this!  Maybe, in part,  through us patients and through the work on wonderful organizations like International Autoimmune Encephalitis Society


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Should I Get the Flu Shot if I have Autoimmune Encephalitis?

Should I Get the Flu Shot if I have Autoimmune Encephalitis?

October 5, 2018 | Barbara Vujaklija, RN

‘Tis the season.  No, put away the holiday cards and gift wrap, I’m talking about Flu season.  IAES has received a few inquiries recently about whether or not Autoimmune Encephalitis patients should or can get the flu shot. So,  I thought I would share a few facts about the flu shot and how it relates to AE warriors.

First of all, there are two types of flu vaccination available, the shot and the nasal spray. DO NOT TAKE THE NASAL SPRAY. The difference between the two is that the nasal spray is a weakened live form which we CANNOT have and the shot is NOT live so we CAN take it. The flu shot has gone through a process that kills the virus while leaving particles that provoke an immune response against the flu. ALWAYS check with your doctor or at least let your Primary Care Provider (PCP) know that you plan to take the shot.

“I don’t get the flu shot because it gives me the flu”. Boy I wish I had a dime for every time I heard that one. Yes,  you can feel sick after the flu shot but while it’s normal to feel soreness, redness, tenderness, or even develop a mild fever or body aches during the two days after you get vaccinated, that’s just your immune system responding.  It is NOT the flu illness itself. The shot primes your immune system to recognize the flu should you become exposed to it.  This is why you will have mild flu symptoms while your system gets ready to fight off the real thing should you become exposed. If you do get the full blown virus after a shot,  you were already infected before you got the shot and were going to get sick anyway.

The Centers for disease Control (CDC) has a great paper I highly recommend: Vaccination: Who Should Do It, Who Should Not and Who Should Take Precautions 

Basically everyone over the age of 6 months should get vaccinated unless they have an allergy to any part of the vaccine. For instance an allergy to eggs, as the virus used in the vaccine is grown in eggs, would be a reason NOT to get the flu shot.

 

How we get the vaccine every year is a fascinating journey. Researchers from the World Health Organization (WHO), start after the current season is over and test poultry and pigs in the East (China etal) for the next predominant strains for the coming season. Then a special panel of scientists and doctors decide which strains are most likely to be predominant the next season. Do they always get it right? Nope! But it is more often right than wrong and is the best system we have. The manufacturing process takes the rest of the year which is why they start so early risking mutations along the way.

“Should my family get the shot?” YES the CDC recommends that all household members and frequent visitors get vaccinated to help protect those of us with low immune systems. Except those under 6 months or with a valid reason not to take the vaccination. Ask sick people to stay away and avoid crowded indoor spaces during the season which lasts from fall to winter with peak season November through March, to avoid catching any mutated strain that is not in the vaccination.

Another question I frequently hear is, “If I get the shot too early it will run out before the season is over”.  There is no perfect time to get your flue shot, but when I worked at the County Health Department we advised people to get the shot late September or early October. The antibodies take about 2 weeks to produce a major response so you will be protected by mid October and will generally last for the entire season. Some doctors prefer that you take it at a different time. Check with your PCP if you are unsure. Peak flu season is November to February but can be in your community in September and October. So unless your PCP says otherwise, as soon as possible is best.

You can help protect yourself by practicing good health hygiene. WASH YOUR HANDS OFTEN, try not to touch your mouth and face, stay out of crowded indoor spaces and ask sick people to stay away while they are ill.

If you have further questions, please e-mail me at admin IAES@autoimmune-encephalitis.org


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

The Turbulent History of an anti-NMDAr Encephalitis Warrior

The Turbulent History of an anti-NMDAr Encephalitis Warrior

August 22, 2018 | Sarah Galloway

Epilog:

From: My Broken Reflections by Sarah Galloway August 2018

“The very in recovery. The swell to well. I am elated to be back to my normalish ways and wanted to celebrate with you all. Even after the darkest time, the weight has lightened, and I find myself in a good space. A wide space where I can work freelance from home. Where I can run and not be broken by it. Where I can walk and not grow faint. So much was lost in April. After 3 months on a psychiatric ward, a lot of which was spent in utter confusion and isolation, I am freed. I am unburdened and amazed again by the support and unconditional love of friends and family and in the church. So onwards we go! I am so thankful and so encouraged by how sharp a corner I have turned. Let it continue! Thanks guys. You make me strong.”

It was in the months before Sarah Galloway was due to start her final year at university when she started to suffer a suspected psychotic episode. Smashing windows, self-harming and shaving her own hair, the 22-year-old student in the U.K. had to be sectioned despite the best efforts of her supportive family. Sarah was quickly diagnosed by doctors with bipolar disorder and prescribed psychiatric medication, but a later blood test revealed a different diagnosis: anti-NMDAr encephalitis.

“I started getting suspicious thoughts my boyfriend was lying to me, and I thought I was pregnant. I cut my hair off, I started being aggressive and breaking things and self-harming. During the episodes it is like I’m in a dream. I will be self-harming and wake up halfway through with no idea what’s going on, and that’s the most worrying part as it could claim my life.”

In December 2016, Sarah made this 12-minute documentary called “Butterfly Brain”. which accompanies Sarah during her last month of possible treatment for a antibody mediated psychosis/anti-NMDAr autoimmune encephalitis. If the treatment isn’t successful the video reports, her future is uncertain, if it is successful she can look forward to a promising road to recovery.

Regular plasma exchanges to replace Sarah’s antibodies allowed her to complete her master’s degree in chemistry at Oxford University. But she suffered a relapse and had to spend 10 months recovering in a Newcastle hospital.

Despite this turmoil and shortly after being home with her parents, Sarah, then 26 years old, was a guest speaker in celebration of World Encephalitis Day 2017 where she told her story in order to raise awareness for autoimmune encephalitis. Shortly after the event, Sarah was interviewed by The Chronical which contains a video interview with Sarah and her Mother, Heather Galloway a former General Practitioner.

At the time of that interview, despite all of her symptoms, Sarah believed the worst part of her condition was the uncertainty it brings.  “I don’t know what’s going to happen day to day. The future at the moment is just blank for me and I don’t really like that.”, she said.

On December 9th, 2017 Sarah wrote this poem about her journey and relationship with autoimmune encephalitis.

Surrender

I am not a fighter
It is not a win or lose
I am a boat lost at sea
That looks for a lighthouse
I am beaten and bruised
There is no choice for flight 
But only the choice to carry on
I may be overcome
But I have a voice
And a song
I do not wrestle
As though I had the strength
But I am strong
And I settle
To be swayed and bent
I may break
But that’s okay
I don’t have to see
The light in every day 
When they are so dark 
I am not a fighter
But so far I have survived
On a journey
I was not prepared to embark
And I am so thankful
For the blessing
Of being beaten
Stark
But alive.

Sarah is an ambassador for International Autoimmune Encephalitis Society and active member in our educational support forum.  She frequently shares her experiences to give others support and encouragement on their AE Journey.  Below is a real time account of the relapse Sarah experienced earlier this year.  Although she had had her story published in the paper shortly after presenting for World Encephalitis Day 2017, had completed a documentary of her journey in late 2016 keeping her story and diagnosis in the public arena.  She still found herself victim not just to anti-NMDAr autoimmune encephalitis, but to the lack of awareness in the medical community.  Never has a patient with a confirmed diagnosis who put herself clearly in the public square to raise awareness for this disease had to suffer so much due to lack of education in the medical community.

On or about April 1st, 2018 (the date is unclear as she cannot remember, Sarah was sanctioned (legally committed) for what would be a three-month period.

June 14th, 2018

  “I hate this illness… Five years down the line and due to a delay in my immunotherapy I have had a severe relapse and ended up on a sanction in a psychiatric ward. Fun times.”, she wrote IAES.”

June 15th -2018

“Hello! I think an admission was unavoidable, but we are putting in a complaint as the consultant ignored the encephalitis diagnosis and the wishes of my parents. I’ve been here two months which has been rather traumatizing in itself. Basically, my rituximab referral got lost so I was a month overdue, we’d been trying a new mood stabilizer, but it clearly didn’t work and then I had 3 incredibly stressful life events all in one week. Instead of removing my new drug and then putting the ones I had to be stable with the doctor went off on a mission and instead tried increasing the quetiapine (which destabilized me even more and I kept ending up in isolation as I was highly aggressive) and then got rid of all my usual PRN for anxiety and tried high dose of olanzapine which just made me a zombie for a month. The complication in my case is that I’m technically under the oxford neuro team and my neurologist in Newcastle hasn’t felt qualified to be taking charge so I get passed around the myriad of consultants that I have. Also, I actually get my treatment through rheumatology and have gone through a lot of the options out there. I also currently live in a brain injury unit but have been working towards getting carer / flat. They have been slow to take me back as they aren’t medical staff and were probably freaked out by the extreme behavior that was being reported from the ward. Fortunately, a few weeks ago my consultant changed and although they do keep trying to diagnose me with a mood disorder they listened to our wishes and after a steroid infusion I’m back on the up for now.”

June 18th -2018

Two months ago, I was a wild animal, destroying everything in my path. I beat myself black and blue in isolation, gave myself concussion and ended up at A and E twice with swollen fists, having to be carried back by security kicking and screaming.

Now I am finally back on the right medication I am making amazing progress by the day. The last two months have been traumatizing but now I feel better than ever. My biggest fear in April was that the recovery would be the same as the initial episode but thanks to all the intervention of my neuropsychic and the fierce advocacy of my family we are on the mends in record time.

This illness is vile, but every day of recovery is a worthy day and even in relapse the benefits are not always lost. Never give up hope. Remind yourself of your achievements and don’t put life on hold! Live in the joy of surviving not the fear of being overcome.” 

View Sarah’s Art

ABOUT anti-NMDAr Autoimmune Encephalitis

No two cases will have the same outcome, with some able to return to their former lifestyle while others can require residential care for the rest of their lives. Anti-NMDAr encephalitis has a myriad of symptoms.

Anti-NMDAr encephalitis and how it presents:

70% of patients experience a viral-like prodrome including lethargy, headache, upper respiratory symptoms, nausea, diarrhea, myalgias, and fever. These symptoms occur an average of 5 days (no more than 2 weeks) prior to onset of behavioral changes Psychiatric manifestations are broad and varied. Because of the frequent absence of neurologic symptoms at the beginning, patients are often first seen by a psychiatrist. Psychotic symptoms predominate, including delusional thought content, perceptual disturbances, and disorganized thoughts and behaviors. Specifically, patients usually exhibit anxiety/fear and agitation, along with paranoid ideation, mood lability, and bizarre behaviors with personality change. Many patients can become combative and aggressive and have blunted affect. While psychotic symptoms are common in adults, pediatric patients often have manic symptoms such as irritability and behavioral outbursts, sleep dysfunction, hyperactivity, and hypersexuality.

In addition to behavioral changes, cognitive deterioration and abnormal speech often develop. Short-term memory deficits and confusion are common as are difficulties in normal activities of daily living. Patients of all ages frequently experience progressive decline in speech and language, including echolalia, perseveration, mumbling, and mutism. These alterations in speech often persist throughout other stages of the disease.

Early psychiatric changes are followed by more global alterations in consciousness and decreased responsiveness, sometimes progressing to a catatonic-like state with mutism and eyes open, while other times demonstrating increased agitation. This stage is accompanied by abnormal movements, such as orofacial dyskinesias, dystonic posturing, and choreic-like movements of limbs, as well as autonomic instability (hyperthermia, tachy- or bradycardia, hypo- or hypertension). In children, abnormal movements are often part of the presenting picture rather than occurring later in the disease process. Another common complication at this stage is hypoventilation, particularly in adults. Seizures are also a prominent feature of anti-NMDA receptor encephalitis.


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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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.

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