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Raising Awareness of AE During the Recovery Period

Raising Awareness of AE During the Recovery Period

June 9, 2021 | By Elly Knaggs

Message from the International Autoimmune Encephalitis Society Team:

The staff at IAES is proud to present Part II in the blog series by AE Warrior Elly Knaggs. Following Part I of her AE blog series this past February, Elly decided to submit a press release about her struggle and to help raise AE awareness! Please find links below to this press release and Part I in her amazing and inspiring story!

Doctor’s thought a Queensland mum was having a pandemic breakdown. They were wrong:

https://www.9news.com.au/national/autoimmune-encephalitis-doctors-thought-queensland-mum-was-having-a-pandemic-breakdown-they-were-wrong/3d04d5ef-c30b-4c5a-8167-a02a162e77cb?fbclid=IwAR0SNDmjtjITH3OtYli3QxW1aQ_AtGhvvau0Y8gSmqrYbHvO0FwsRNRb6cs

IAES Blog Part 1:

https://autoimmune-encephalitis.org/magical-demon-of-a-brain/

——

 

INTRODUCTION

It’s been about five months since my last blog entry. Medical progress has been slow. But….positive progress on many fronts has been made! I submitted a press release regarding AE and my first blog and the story has received national press coverage here in Australia!  I’ve been stable on my current medications and I  refuse to back off or wean off the meds for fear of returning symptoms.

WHAT LIFE IS LIKE FOR ME

elly knaggs 2 139x300 - Raising Awareness of AE During the Recovery PeriodIt’s funny how quickly life can change with a disease of the brain such as AE. One minute you think you are working and recovering and  the next minute you seem to be falling down the rabbit hole again.

Let me back-track and begin where were left off:

Since my last blog (Part I) I had been granted the opportunity to work two days a week as a hairdresser. The challenges I faced during those first few weeks were hell. I had lost the ability to mix hair colour, understand hair colour formulas, read hair colour cards and perform colour corrections. Each afternoon I would have seizures, brain fog, mental exhaustion, physical exhaustion and mental breakdowns from how exhausted I was. I wanted to give up. I  felt immense stress about something I had been so talented at. This really tore me down. However, each week I managed to regain the skills I had lost.  The afternoons were becoming easier on my body and mind. After six weeks, I was able to manage three staff members and function as I once did as a hairdresser. But was I really? In my world I was managing. I was gliding through life and feeling so confident. I even took up volunteering one day a week at a nursing home. If you remember, I am a nurse and the goal has always been to get back to nursing. However, to the outside world and to many people, my improvements were not how I perceived them to be.  Sadly, I was not improving at all. In fact, in many respects, I was no better then when I began my AE journey. That is what I think is most sad about  Autoimmune Encephailitis; your brain no longer works as it once did and self perception sometimes changes dramatically.  I was told I was being irrational in the salon. My memory was dreadfull and I had a huge fit at work.  Sadly, the lady who owned the salon had to let me go. This was a huge shock and I was devastated. It took me several  days to realize she was right with her decision.  I am still too early in my treatment and recovery to even think of taking on such tasks like working in the environment I was in. I still have  much time ahead of me to allow further healing. To be honest,  it was the reality check I needed. I need to give my brain time to rest and to heal. Time and patience are my friends and that is what this disease takes!

I was diagnosed with frontal lobe brain damage due to AE.  The symptoms and issues I was having and still do have may explain why I could not see what was happening in the work place.

Being diagnosed with  frontal lobe brain damage knocked me back mentally.  I felt that my world was crashing down. And I felt if only the medical profession had believed me for the four months they left me with an inflamed brain, would I have brain damage? But I know I cannot dwell on what was and what was not.  I can move forward in a positive way and try and use my brain and increase my daily activities!  “use it or lose it” as the saying goes!!

On another positive note, the neuropsychiatrist assured me that with the right medications, frontal lobe damage can be helped. Of course, brain damage will always be brain damage but the brain is amazing and can create new pathways with the right therapy and medications. This process may take months or years. I, also, know that during this time and process I’ll need to manage the body changes and side effects different therapies and medications may cause or induce.

At times, I feel  the medical system, both with their help and lack of help has played a big part in this. I am now at a point where I feel my conversations with friends and family are consumed by medical terminology. I can no longer hold normal conversations. At times,  I no longer want to leave the house. I no longer want to keep friendships as I feel I am burdening people. I guess that’s what happens when you dive down the rabbit hole of a chronic illness and the mental aspects that can follow.  I have now found a new respect for others suffering the same  challenges. While I sometimes dwell in my sorrow, I do see a positive bright light sometimes. Yet at other times it is hard to see the light through the storm. I am looking towards new beginnings. I am thinking of  buying a push bike and hopefully finding new friends to enjoy fresh air and exercise with.

NEW SPECIALIST

I have a new specialist on the list of doctors I see. I have welcomed aneuropsychiatrist to my team.At one time I rolled my eyes at and refused to think about neuropsychiatry. After all I had spent 11 months refusing mental health referrals. Little did I know neuropsychiatrists help deal with the psychiatric and physical conditions relating to brain illness’ such as AE, encephalitis, Parkinson’s, MS, trauma, strokes and movement disorders. This specialty works well within the grey areas of neurology and psychiatry and helps to ‘marry’ the two for the benefit of the patients.

The neuropsychologist helps me work with and through my limitations and issues I have due to the frontal lobe damage. Frontal lobe damage is where the executive functioning happens in the brain. I am told this area of the brain helps to control, emotions, sleep patterns, involuntary movement and my ability or inability to organize my thoughts and life. For example, sometimes I have the emotional stability of a 16 year old that is being unreasonable. At times I loose my ability to judge a situation or I can act irrationally. I can become aggressive and/or agitated. This can happen when I am tired, over stimulated, am in an unfamiliar place or I have to process alot of information such as at a doctor’s visit. At times my body jerks due to the frontal lobe damage. This can happen during the day or night.  And my sleep patterns can vary to wanting to sleep all the time or not at all.

This doctor helps via therapy and medications. Of course the meds come with side effects and they may work for some and may not for others. Anti seizure medication is what has been helpful for me.

WHAT’S NEXT AND THE NEVER ENDING SEARCH FOR ANSWERS

elly knaggs 225x300 - Raising Awareness of AE During the Recovery PeriodAt times I wonder. How did we get here? Nobody knows. What is wrong with me? Nobody knows. If we cannot find how we got here? How can you fix me? I feel the medications I am on are simply masking something more sinister. I have spent incredible amounts of money, time and energy on my health and trying to get better. Maybe  I should be focusing and trying to accept where I am, how far I have come and positive ways to get better mentally and physically.  Let me ask you, if you were me what would you do? Would you accept this or forever search? I feel as though I never want to give up and I will always search for answers to help figure out AE!

The doctors are baffled as to why I cannot wean off the medication without all the neurological symptoms returning. I have asked all these questions many times. The bottom line is awareness and research needs to happen to be able to more fully answer the questions for me and for all with AE. We simply need to move forward and help to find the answers as to why the body is attacking the brain. 

THE FUTURE

As for my dream to become a nurse, I feel at times it is slowly slipping from my fingertips. Right now, I cannot work in a high functioning job such as nursing due to the damage my brain has incurred. So, I will put all things into perspective. Nursing is not my top priority yet. Getting well is. And in time I hope to pursue nursing and hope never to give up on that dream!

To be continued……………….

elly knaggs 2 226x300 - Raising Awareness of AE During the Recovery Period

 

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

guidestar platinum logo 300x300 1 e1605914935941 - Raising Awareness of AE During the Recovery Period

 

 

 

 

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. 

Trivia Playing cards 3 FB 500x419 - Raising Awareness of AE During the Recovery Period

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.  

AE Warrior Store 300x200 - Raising Awareness of AE During the Recovery Period 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

My Magical Demon of a Brain

My Magical Demon of a Brain

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.

elly knaggs - My Magical Demon of a BrainI want to take a moment here  for my family.  They watched me fall apart over and over again. My husband who felt like he lost his wife. My children who felt they lost their mother.  My mother who felt she lost her daughter. I have watched my mum and my husband break down.  It completely breaks my heart.   I am so thankful they stand by me even though I don’t show it much. Without them I would be lost in a dark world of nothingness. My children understand as best they can given their young ages.  I see the heartbreak in my older son’s face when I ask him what the name is for piece of fruit  or when I act irrational and slam doors because I cannot control my behaviour.  I have lost some of my ability process information due to my brain being inflamed for so long. I will spend my life fighting for them just as they have fought for me.


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’.
elly knaggs 2 - My Magical Demon of a Brain

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

guidestar platinum logo 300x300 1 e1605914935941 - My Magical Demon of a Brain

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. 

Trivia Playing cards 3 FB 500x419 - My Magical Demon of a Brain

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.  

AE Warrior Store 300x200 - My Magical Demon of a Brain 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

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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