September 27, 2023 | By Amanda Wells
Introduction from the IAES Blog Team:
The staff at IAES is proud to present to you the heart wrenching AE story of Hannah Wells written by her biggest fan and advocate, her mom! This journey travels a very long and bumpy road but also is one of resilience, never ever giving up and, mostly, this is a story of love!
Have you ever noticed how many people, when they are encouraging you, will say, ‘Oh, don’t worry you’ll get there’ but what if you no longer remember where ‘there’ is?
When my youngest daughter Hannah was born, she was 6 weeks premature. On Christmas day of 1983, the paediatrician called and said, ‘If she doesn’t fight, we will lose her, it’s now up to her’! New Year’s Day 1984 he called again, ‘Come and pick her up, take her home, she is a real little fighter, she did it!’ That day when she came home in our arms, we had no idea how that little fighter would have to dig very deep, again, and fight for her life 35 years later!
Hannah was our social butterfly, she was popular with everyone, and everyone seemed to know her! Once she started to talk, she never stopped. Her Grade 1 teacher said to her, ‘Hannah if you can stop talking in class for a whole day, I will give you $20.’ Hannah couldn’t stop talking so the $20 was left wanting!
At age 35 she had been working as a Practice Manager in a Dental Surgery for 10 years. She was amazing at her job. Dentists and patients alike loved her. She was chatty, never took a sick day, and was always organized. Hannah would call me every day from work just to fill me in on what was happening and to touch base.
Around the end of April/ May 2018, Hannah got the flu. She was suffering from headaches and became deaf in her right ear. She went to a general practitioner, and he said, on the third visit, to see a psychologist, he did not believe her headaches were real!
Then one day, in early June, my husband (who was still alive) and I had just been to IKEA and were on our way home when my mobile phone rang. It was Hannah. She had called me the night before to say goodnight and was fine, but this call was anything BUT fine. She was paranoid, delusional, and hearing voices. She had made up some unbelievable story of what was happening next door. I got off the phone and remember feeling ice in my veins, my husband, Hannah’s dad, and I looked at each other and said, ‘What alien has stolen our daughter?’
The days that followed that fateful June day were horrendous. Hannah was in full-blown psychosis. She would call me up to 30 times all night long, as she had insomnia. Her thoughts were disorganized, she could no longer work, and she couldn’t remember how to turn a computer on, copy and paste or even how to unlock a door. She couldn’t change her clothes because she couldn’t remember what clothes went where. She had no idea what day it was or even who our Prime Minister was. She would take off in the car and we didn’t know where she was. She didn’t even know where she was. The internal trauma and also one of her symptoms were now causing unimaginable rage.
When this all began Hannah developed dyskinesia or involuntary and jerking movements. She lost an extreme amount of weight and was now 35 kgs (between 75-80 pounds). Her anxiety was through the roof, and she had become aggressive. Her hair was falling out in spots, and she had tremors in her hands. Hannah knew something wasn’t right but by now had no idea how to articulate it. She was living in a mental prison that was terrorizing her. She knew, in all this chaos, something was wrong in her brain but had almost stopped talking. When she did talk, she would repeat the same sentence for hours, therefore she was unable to articulate how she was feeling.
She/we needed help, this was not our daughter, and I was desperate.
I took her to a nearby hospital emergency department hoping they could help her, but sadly this is where the nightmare really began. Not one test was done except a blood test for drugs. The on-call psychiatrist took me aside to ask what happened. I told her, ‘Hannah has never taken drugs, doesn’t drink, has no past or present trauma, and no mental health in the family. I said this happened, literally, overnight’. I will never forget her reply, ‘That means absolutely nothing.’
Hannah was sectioned under the Mental Health Act and put into the psych ward. The only test done was daily drug testing, no neurological testing was ever done or even suggested. The psych wards in our state are still lock-up wards. She was started on Risperidone, but Hannah refused to take it and would spit it out, as she told us much later, it was making her feel worse.
After getting her released from that psych unit, we decided to take her to one of our large teaching hospitals. They took her from me, and I had no further contact with her. I wasn’t asked what led to our decision to bring her there. They placed Hannah in a room with no water, bathroom, or blanket and took her phone away from her for 12 hours, no one checked on her. They then sectioned her under the Mental Health Act again.
I was trying to speak to a doctor and when I finally did, he told me she had been on drugs, ICE, and that’s why the dyskinesia in her face and weight loss. I asked if he had her chart in front of him and the blood test to confirm this. He admitted he didn’t! Again, no tests were done on Hannah, we couldn’t get information about her from the staff, and by now we were desperately trying to get her out of that hospital and under a private doctor’s care.
To this day I have no idea how my husband got her out of there and got her an urgent appointment with a private psychiatrist, but somehow, he did! She was immediately admitted to a private psych hospital. They did an ECG (on her heart!!!) tested her blood for drugs and that was it. They put Hannah into 2 weeks of CBT, cognitive behavioral training for someone, who cognitively, was a mess! Her short-term memory was non-existent. She was unable to read, write or comprehend 2/ 3 sentences. They also prescribed new antipsychotics! Hannah’s memory and executive functioning abilities were in total chaos, but not one person suggested a neurological workup! As her Mum, I had never felt so hopeless in my life. My daughter was there on the outside, but on the inside, it was like she had left us permanently.
By the end of September and Hannah’s initial psychosis was at last dissipating. There were still the outbursts of rage, strange seizures where she would seem to be frozen, dyskinesia, and limited speech that was often slurred. She would still repeat a phrase or thought for hours, we called it her hamster wheel.
2018 turned into 2019. Trying to get through 2019 was difficult, to say the least. Not only had the disease traumatized her but the auditory hallucinations and repeated hospitalizations had bullied her. She was still very sick, and the doctors had no answers at all!
In 2020 I decided to take her to my dermatologist to check the alopecia (hair loss) that had begun back in 2018 when this all first began. She did a blood test and told Hannah she needed an endocrinologist immediately. She felt she had a thyroid problem. Her blood samples showed abnormal levels. The endocrinologist who treated my husband for osteoporosis, treated Hannah for Graves’ disease, but soon realized this was not her thyroid, there was something else going on and as she said, ‘it was above her pay grade.’ She sent Hannah to her brother who is an infectious and rare disease doctor.
During this time, I went with Hannah back to her psychiatrist who still insisted on seeing her monthly. I was stunned when we told him about the blood tests and the endocrinologists’ findings. He said, ‘I believe this is just a false positive and she just has anxiety and stress.’
By November 2020 we now had seen the rare diseases doctor who flagged her for Autoimmune Encephalitis, but he was stumped and believed she needed a neurologist. We found a neurologist who knew about AE and waited 6 weeks for an appointment.
During all this, my husband, Hannah’s dad passed away a few days before Christmas 2020. I had been caring for him for the last year and for Hannah also. I was exhausted!
Hannah and I were now both grieving the loss of a great husband, an incredible dad, and for Hannah, and the life that she once had.
It was 2021 by the time we saw the neurologist. He ordered an MRI, lumbar puncture (LP), and EEG. He told us the MRI came back normal, as did the LP, but the EEG indicated slowing in the temporal lobes, He said he believed she had Autoimmune Encephalitis. He put her on high-dose steroids tapering down for 3 months. There was some improvement after 3 months, so he repeated the high-dose steroids. He then put her on Cellcept and steroids. He told her to come back if she needed him.
In April 2021 Hannah had a horrific reaction to Cellcept. The neurologist discontinued Cellcept, but she remained on steroids. He said he felt it was now probably too late to treat her! During this time, Hannah began to have breathing issues, but a CT scan did not reveal anything amiss. I was very concerned about Hannah’s bones with all the steroids and told her neurologist, as osteoporosis runs in the family.
April/ May 2022 Hannah seemed to be in a relapse. The only answer they had was more high-dose steroids. Hannah’s GP (general practitioner) was concerned and referred her to another neurologist for a 2ndopinion. This new neurologist, also, said it was Autoimmune Encephalitis and put Hannah back on another round of high-dose steroids and wanted Hannah to have full cognitive testing.
This journey was beginning to feel like one big roundabout that had no exit. Trying to get any proper treatment was almost impossible.
Her cognitive testing showed deficits with her executive functioning, word processing, short-term memory, and visual abilities were all very badly affected. Hannah was told she needed brain rehab immediately. The report said that this was caused by Autoimmune Encephalitis and damage to the temporal lobe.
The neurologist then said I will see you in 6 months and since it had been 4 years since this all began it is too late to treat Hannah. Her MRI showed a small amount of inflammation, but again ‘It’s too late to treat her now.’
At this point in this long terrifying journey, I was ready to scream. Hannah was now traumatized by the very system that is supposed to heal and help you navigate through a rare disease.
Exactly one week and one day after the neurologist sent us on our way for 6 months to Rehab which was possibly never going to happen because of the long wait list, Hannah ended up in a Private hospital Emergency Dept on her birthday, she was extremely sick. They suggested we go back to her endocrinologist. I was so frustrated we were back at the beginning again! Hannah was devastated. She lost her career, her friends, her life! This disease is harrowing and traumatic, and you have to walk the road to somewhere …… alone!
I was able to obtain Hannah’s complete medical chart that included all prior testing and information. I was beyond incredulous at what I was looking at. Her breathing issues back in 2021 when they said the testing showed nothing amiss was a rib fracture. I was right, this looked like osteoporosis! All her blood tests showed inflammatory markers through the roof since her relapse in May 2022. Her GP couldn’t believe how sick she was. She was now having around 4/5 seizures a day. Her dyskinesia had returned, and anxiety and OCD through the roof. The GP prescribed Azathioprine and steroids, and seizure medication.
I asked for a bone density and her bones were a mess, at 39 she now had osteoporosis!
I thoroughly researched all possible doctors we could contact and turn to review Hannah’s case. I found 2 immunologists; one was a neuroimmunologist whose interest was in Autoimmune Encephalitis. Both had 12-month waits. I wrote to both doctors a letter pleading for help and succinctly outlining Hannah’s case history and her present-day symptoms. Her endocrinologist was stunned she was back where she started 4 ½ years ago, she even contacted the immunologists. Both immunologists denied her an appointment. Their reasoning? She was too complicated and was in the system for too long.
Then out of the blue Dr Martin Newman, the neuro immunologist with experience in AE had a change of heart and called wanting to see her in three days. Her medical file had almost 100 pages (and this was missing most of the beginning files!) and after 5 minutes he said to her, ‘So have they treated you with IVIG or Rituximab?’ Hannah said, ‘No.’ His response was ‘Why not’! Hannah cried, as she sat before someone who just maybe would now help her come back from the brink of the darkness of shame, guilt, isolation, and feeling lost, and she asked him, ‘Will you be able to help me?’ His answer was, “I certainly will Hannah.’ He started Hannah on IVIG in early May 2023 followed by two Ritux infusions. She will most likely be on both for the foreseeable future. Hannah is now, also, in weekly Brain Injury Rehab.
It is now 5 years since Hannah stood on the edge of insanity and a harrowing nightmare. Hannah had almost forgotten who she was and what it’s like to be ‘normal’ and healthy.
I am so thankful to Tabitha Orth, President and Founder of IAES and the IAES family. They were always there, whether I needed a rant or information, their resources seemed limitless. I had no choice but to learn everything I could about Autoimmune Encephalitis. I realized, for an advocate, knowledge is power! I am so thankful for IAES who gave me so much knowledge so as to keep advocating for my daughter.
After 4 months we have seen great improvement. She is mentally and physically up and down. Each day can be different, which we were told to expect, but her progress especially cognitively has amazed all those caring for her medically.
IVIG dealt with a lot of her physical problems. Rituximab kicked in around 9 weeks and she was amazed at some of the improvements cognitively. Where almost ‘there,’ even though ‘there’ is different from what I had expected, but ‘there’ is more than OK. One of the remaining issues with AE is loss of identity and confidence. Hannah’s motto through all this is: ‘I was enough before and I’m enough now!’
After 5 harrowing and terrifying years, we have learned a lot. If you are an advocate/caregiver or even a patient trying to advocate for yourself, don’t give up! There will be someone out there who has a small beacon of light, a life raft for you to jump in, and most of all hope to give you the strength to keep going. IAES and their personal care held a torch for me to see and guided me to the tugboat whose name was ‘DON’T QUIT!’
Just find that light and keep your eye on it!
Your generous Donations allow IAES to continue our important work and save lives!
On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.
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
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