February 15, 2021 | By Elly Knaggs
Introduction from the International Autoimmune Encephalitis Society Team: the third in our AE Awareness month blog series is from a newer IAES Warrior member.
As this story highlights, AWARENESS, is key for all forms autoimmune encephalilits but, also, in all forms of illness!
On the first day of April 2020 my life was to change forever. I just didn’t realize the depth of which I would fall into this dark world.
I woke in the morning of the first of April to vertigo, something, I had never experienced before, but knew all too well through my nursing training that something was amiss. I quickly rang a nursing friend and half-jokingly said, I think I’m having a stroke. She reassured me I was too young and there was no way I was having a stroke. I spent the day trying to get through my nursing school assignments, without much luck and tiring very quickly. I took a nap. I woke to one of my husband’s favourite dishes “spicy soup”. When eating this dish I usually carry on like a idiot, grunting at how spicy he makes it and blowing my nose as the heat takes over. To my surprise half way through the dish I realized I could not taste or smell the soup. I panicked and told my husband who very bluntly said oh no “you have COVID”. I grabbed every curry paste of out the fridge desperately trying to smell something and once again, to my surprise, I could not smell anything! We had been travelling around Australia for the 16 months prior to this and I could have potentially picked the virus up from anywhere. I decided to sleep it off and see what tomorrow brought.
April second, the day I think reality had set in, I rang my friend back and said I either have COVID 19 or I am defiantly having a TIA (transient ischemic attack, aka mini stroke). We spoke for a while and felt it was needed I see a doctor immediately. This is when things really got spicy. The nurse handed me scripts for Stemitell and pathology forms. I went across to the chemist(pharmacy) where I needed to fill the perscriptions. While collecting my medication the chemist(pharmacist) was very angry with me. He explained my behaviour was not acceptable and they would not tolerate my swearing, spitting and aggressive behaviour. I was confused and scared and knew deep down something was seriously wrong with me. I ran back across to the doctor without collecting my medications and said something is not right. I was taken into the examination room and it was discovered I had lost vision in my left eye. I was extremely confused and failed the neurological observations/exams. The doctor rang my husband who had been sitting outside in the car for hours by this point and explained I needed to go straight to hospital. My husband drove me to the next town which was the longest car ride of my life. I felt blank, I couldn’t’ talk. I couldn’t do anything but stare blankly out the car window. Armed with a note from the doctor and leaving my husband and children at the door (remember it’s a world pandemic so I had to face this alone) I walked into the hospital. I don’t remember much of which happened. I do remember I could not recall my date of birth, where I was, and kept questioning if this was a real hospital. Next, I knew I was prepped for a CT scan and lumbar puncture. I remember, I couldn’t sign my name. I had no idea how to even hold a pen. Within a few hours I had anti-viral and antibiotics run through an IV. I, then, remembered a nurse taking down everything and saying you will not be needing any of this. All of a sudden I was taken upstairs to the ward for the night and discharged the following morning with no clinical findings. I was referred to a mental health doctor.
When I left the hospital I was confused, disoriented and slowly losing my ability to talk, think or function. I hopped into the car and explained I had no idea what was going on.
The next day my husband took me to a different hospital, where I passed the neurological examination and I was discharged with anxiety issues due to the Covid 19 pandemic.
All blood tests and COVID testing had returned normal. The doctors could not find anything wrong with me.
Over the next few days the GP who I had seen me kept sending me for different scans to rule out any other cause, all of which kept coming back normal.
I was rapidly declining, my vision was blurry in my left eye, my taste and smell had not returned.
Day after day I was slowly losing the ability to function. I would slur my words and stutter. My head felt like it was being suctioned from the edges of my brain. The left side of my body had also lost function. My left hand had seized up and I had terrible pain in my left leg. I could not remember anything, including how to dry myself when I got out of the shower. I couldn’t butter bread, and basic objects no longer had names. I would point and grunt and to indicate what I needed. I remember my daughter asking me to brush her hair. I vividly remember saying “if you can show me what a brush is, I can figure out how to use it”.
My husband decided it was safer to move us into a holiday(vacation) house away from the caravan(RV) park, as the oldies were becoming concerned with my behaviour. At this early stage in the pandemic everyone was scared and I was becoming the talk of the park. I would spend hours staring at the water and greet people with “good morning, nice bird on your shoulder”.
Once we had moved into the holiday(vacation) house, I started sleeping in excess of 15 hours a day. The pain in my head was unbearable. It was hard to explain to your loved ones when you have lost the ability to communicate. Concerned with how quickly I was declining, we requested a referral to a private neurologist on the Gold Coast. The neurologist told us I had some sort of inflammatory response in the brain and I would get better, go home, rest and he would repeat a MRI to make sure nothing had developed over the last few weeks.The MRI was clear!
For the next seven weeks, I was in and out of it. I had severe delirium, confusion, aggression and odd behaviour. One time I decided to go for a walk to the beach and asked the children if they could collect the blue bottle jelly fish off the beach into a small bucket that my 3 year old was carrying. Oddly, they did not comply. I was so frustrated I did it myself. I gathered around 8 blue bottle jelly fish and stuffed them into this tiny child’s bucket and carried them home. My husband came outside and asked what I was doing. I explained to him I was cleaning the jelly fish in order to dissect them to show the kids the anatomy of jelly fish. He was furious at how childish and dangerous I was being. He demanded I throw them out immediately. I remember crying and thinking what a horrible man he is to take away such a magical and educational moment I could have with my children. I could not understand why he would make me get rid of them. This is only a glimpses at how irrational my behaviour was over those 7 weeks.
We decided to move back to Queensland as I was not getting better and needed support from family. Then magically, just as the neurologist said, I started to feel better. My speech and vision abilities returned. My sense of taste and smell slowly came back. I could identify objects and use cutlery. I could wash and dress myself again.
After three weeks of feeling great, I took a turn for the worse.
I could not believe it as I was becoming dizzy again. This was the first symptom I had back at the beginning of April.
I started to go back down hill. I was in and out of doctors offices with no clinical findings other than constant referrals to a psychologist. I was at my whits end. I had declined so badly and I was sleeping 15-19 hours a day. The spinning in my head was worse than ever. I felt like my brain was burning and I slowly lost the ability to talk again. I had moments of confusion, delirium, anger and that progressively worsened over the coming weeks. I started hearing voices in my head. These voices tried to convince me of things. I remember looking at the trailer in the shed and thinking this is not the army I signed up for. How dare a trailer be placed in our house like this?!! Another time after sleeping during the day I woke and went hunting for a tent. I was 100% convinced my husband forced me to sleep so he could surprise me with a new tent (I own a caravan(RV) so there is no logic to this. I was not impressed, I did not have a tent. I confronted my husband about it. The scariest moment for me was when I did not recognize my children. I could not figure out who they belonged to. In my mind, I knew they did not belong to me and I thought what on earth where these small humans doing in my house. On that same evening I became paralysed on the couch and I could hear my husband talking to me but I could not respond. I could not move. I could not talk and I just stared blankly at him. He explained to me that I needed a bath. Water helped sooth and ease my symptoms and helped pull me out of delirium. I then went to bed.
Most days I woke in a fairly normal state. Anything and everything would exert me and make me tired. Going shopping would put me in bed for hours. Taking the children to school would send my head spinning for hours. And then the aggression would start. I was like a 2 year old not being able to explain what was wrong with me.
Four long months passed and I was declining. I now realize I was slowly falling into a coma. I could barely stay awake. I could barely function. I would come in and out of these altered states but never for long. I had come to the conclusion that maybe I did have schizophrenia or bipolar disorders. The doctors kept telling me nothing was wrong with my blood work or scans. I was desperately saddened and falling into a deep depression of helplessness. Then I had an angel arrive at my door. She pleaded with me not to go to the psych unit until I had seen her doctor who specialises in alternative medicine. Just maybe the alternative medicine specialist in Brisbane might be able to find something no one else could. Further blood work was ordered. Once again, all lab work came back normal. The alternative medical doctor, who is terrific, referred me to a neurologist who specialises in complex cases. She was the only doctor who believed in me and did not suspect a psychiatric illness. My husband was hesitant to spend more money on another doctor. He told me I could go but I would have to accept psychiatric help if nothing was found.
Sitting in the neurologists office I explained all my symptoms and one critical bit of information which led him to test me for thyroid autoantibodies. Oddly, I had found that antihistamines helped pull me out of my delirium and other agitated states but only for short times. I was eating them like candy but after many weeks they, too, were becoming ineffective. He explained to me if these thyroid results came back positive I would start a high dose of steroids. If the results came back negative he was would diagnose me with post inflammatory syndrome and there was nothing else he could do for me.
To my shock and horror he called 5 days later. He explained my antibodies were positive. I had autoimmune encephalitis. His actually diagnosis was “Steroid responsive encephalopathy of autoimmune thyroiditis”(SREAT). I was thrilled to have a diagnosis. I rushed to the chemist(pharmacist) to buy these magical pills that were going to fix me. Ecstatic, I managed a few phone calls to friends and family amnd told them, “ I’m going to be fixed because they found out what’s wrong with me”.
But…alas, I did not realize is that AE is not quickly fixed and, in fact, I have a progressive disease. I needed time and medication to help get better. The medication was difficult. For example, each day at 3pm I would scream the most horrendous things at my husband. I was convinced he believed I had gone mad and, in fact, didn’t believe I was actually sick. And each day my darling man would go and apologize to all that heard and knew of my erratic behavior.
There was one point, for a week, I thought I was getting better, but in reality, the rage from the steroids was unbearable. We rang the neurologist and said the steroids are not working. He kindly explained we must give it time. He told us it will take 1 month before they start working.
I was convinced he was wrong and I decided to wean myself from 50mg to 25mg in a week. All I can say is, wow, what an idiot I was and obviously not able to think clearly. I was being irrational and acting erratically. I had severe withdrawal symptoms. I was shaking and sweating. I was having panic attacks and I was manic. The doctors were so concerned about my behaviour they rang my husband every night for a week to check in on me.
Then on week 3 on a Tuesday morning I woke up and I felt pretty good. It lasted all day. I did not want to get my hopes up. The next day I woke up and felt OK as well. Then on that Thursday, Friday, Saturday and Sunday it continued. I thought to myself ‘What is happening?? I had tears of joy as each day I began to gain my strength back. These days turned into weeks. The brain fog had cleared. The delirium, dementia, confusion and vertigo had all gone. My cognitive abilites returned and I managed to finally complete my nursing training and graduate.
It’s now been 9 months since the day my life changed forever. My disease has progressed in different ways. I’m now having myotonic jerking and visual disturbances. I get night sweats and tremors. I have nightmares and I still suffer fatigue. I’m still aggressive on steroids but not as often as when I was on a higher dose.
These new symptoms are nothing compared to those early days where I felt my life was worth ending.
I am currently struggling to wean off the prednisolone and I have started taking Cellcept. I am hopeful it will assist to the point I may be able to taper off the prednisone. Prednisone therapy has come with many side effects for me such as growing a white beard, thinning of the skin and anger issues.
I am a very long way from recovery, but I’m on a path that will hopefully lead me into remission. I am resigned to the fact I need help and now receive cognitive and behavioural therapy every week. I think it’s safe to say I am not able to cope as well I normally would have and need a little help. Hopefully, next year I will be granted clearance to nurse and can live a happy life. For now I’m still fighting. I try to stay positive and take this time to rest and reset. As for my cognitive abilities, I am still lacking in many aspects such as with memory loss and fatigue. I am now able to stay awake for a full day and do fairly normal house hold duties.
My AE journey will continue and hopefully, with time and patience I will recover and develop into a new ‘me’.
Your generous Donations allow IAES to continue our important work and save lives!
Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org
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’ 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.
For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.