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The Brave Muriel

My name is Muriel, and I was diagnosed with Functional Neurological Disorder (FND) on June 2, 2023, after a 16-year wait from my first major symptom. 

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Watch a short video about Muriel here, by Not Defined By FND.

  • Youtube

My Story

It all began when I was just 4 years old, after being thrown by my biological father and hitting the top and back of my head. I immediately noticed that I couldn't coordinate as well as the other kids. I also had another symptom, developmental delay, which I would here my teachers talk about me having, but that was likely caused by my autism. My second major symptom started at the age of 7 - migraines. Initially, they thought the migraines were being caused by my glaucoma, but treating my glaucoma didn't make them go away. In 2007, I could feel my proprioception starting to dwindle, feeling like a tower standing up at times (I was 5 by that time). By 2008, the balance issues became more apparent, but that, by itself, wasn't enough to warrant a visit to a neurologist.

 

In 2010, I began experiencing tremors that were initially thought to be caused by the lithium I was taking for my bipolar disorder. However, several years later, I discovered that wasn't the case. Even when they took me off the lithium, the tremors persisted. Around 2014 and 2015, I had my first seizure on the school bus, which ended up being my first near-death experience, as my oxygen levels dropped dangerously, and I had an out of body experience. There was a voice that could only be explained as being the voice of God. He said, “if you aren’t ready to leave yet, don’t look up.” I woke up in an ambulance, and the paramedic informed me that I had experienced an hour-long seizure, and then went on to have several more seizures after that one.

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Test after test after test, all inconclusive. MRI - nothing. EEG - nothing. By 2017, I started noticing difficulty lifting my legs when walking. Neck pain began to occasionally creep in. That same year, I hit rock bottom, attempting to end my own life, mainly due to people accusing me of faking the seizures, and being exhausted and desperate for answers of what was wrong with me. By 2018, I began to have an abnormal gait - my gait was not normal or what it used to be. Memory issues surfaced in 2021, and I would easily forget things, occasionally forgetting what people said immediately after they said it and would have to ask them to repeat it. I also began having bladder control problems (incontinence) and began having leg weakness. By 2022, it was noticed by a physical therapist, but no amount of physical therapy couldn't restore what I had lost. I used to be a cheerleader, but as my coordination issues worsened, I found myself unable to continue. Cheerleading demands precise and complex movements, often requiring multiple movements at once. Similarly, my wrestling career came to an end due to my symptoms. Despite numerous attempts of physical therapy, I was unsuccessful in reversing my symptoms. Also in 2022, I launched The Brave Muriel YouTube channel to raise awareness of what I was going through. Also that same year, chronic nerve pain became my constant companion, 24/7. In 2023, I began to have pins and needles in my legs and tics. 

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Fast forward to April of 2023. I began to have Bell’s Palsy off and on, and by May 2023, I lost the ability to run, and began having episodes of paralysis, especially after seizures. I also started having episodes of dystonia in my left hand. Towards the end of May, I had a seizure that paralyzed me from the waist down, landing me in the hospital for four days. During my time there, I underwent multiple tests.

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On the first day in the hospital, I was bed-bound and experiencing multiple seizures. I had a CT scan, but ended up seizing in the scanner. They attempted to run an emergency MRI, but I had another seizure before they could get me in. Rapid response was called, and I begged to be sedated so they could try again. I wanted desperately to know the name of the monster tormenting my body all these years. They scheduled a sedated MRI for the next day and kept me in the hospital for monitoring. Due to being bed-bound, I had to be put on an external catheter. 

 

On day two, they rescheduled the MRI due to staffing issues. I was having so many seizures that they pushed for an overnight EEG. The seizures were so severe that the electrodes kept coming off, in a continuous cycle of seizures. They were bad enough that I woke up on oxygen, and when I asked why, the nurses explained that they put me on oxygen as a precaution. The nurses had to fight for the doctors to sedate me to end the seizures.

 

Finally, they were able to do an MRI of my spine and brain. That same day, I began experiencing spasms and dystonias throughout my body, and would scream in pain. The nurses could hear me all the way down the hallway! They fought for me to receive muscle relaxers to stop the spasms and dystonias. The spasms and dystonia were so bad that it was causing urinary retention, and they had to catheterize me several times because I could not empty my bladder on my own.

 

On day four, I was given a paper that changed everything. I finally knew the name of the monster ravaging my body for all those years: Functional Neurological Disorder, a disorder that doesn't discriminate against age. Anyone, of any age can get it - even the youngest of people. To this day, I still spread awareness - to help others feel less alone, and in hopes that one day there will be a cure!

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Over the years, my seizures had become more severe, and my parents and I realized that seizure medication helped reduce them. However, I wasn’t taken seriously until I ended up in the ICU in early December 2024. Instead of my usual seizures, which typically cause respiratory distress, I went into complete respiratory failure—I stopped breathing entirely. That was the moment when doctors finally started taking all of my symptoms more seriously, including my seizures.
 

Now, we’re pushing for more answers. While I know that FND explains some of my symptoms, I believe there’s more to uncover. This journey has been long, but we’re committed to finding the full picture and getting the right diagnosis.

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