The Medical Journey of Megan Dixon: FND and Severe Disability
FND Nope
Moderator
In 2018, 13 year old Megan Dixon began to gradually deteriorate. Early in her illness, she reportedly had glandular fever and whooping cough, and according to People magazine, she was initially diagnosed with Myalgic Encephalomyelitis (ME).
In 2019, at the age of 14, her legs stopped working and she has been unable to walk since.
A few years later, in 2021, at age 16, her condition rapidly and severely worsened. She lost the ability to speak and was admitted to Bristol Hospital with a suspected stroke.
What was initially expected to be a four day hospital stay ultimately became a two year admission, lasting until 2023. During this period, she became paralysed from the neck down and was unable to walk, talk, open her eyes, or swallow, requiring a feeding tube for nutrition. She reportedly experienced up to 50 seizures per day and was told she would never move again.
At some point around 2023 (the articles do not specify exact dates), she was reportedly diagnosed with Functional Neurological Disorder (FND) and transferred to a rehabilitation facility, where she underwent 18 months of intensive therapy, including physiotherapy and speech therapy. Through rehabilitation, she regained the ability to speak and move, while her seizures reportedly decreased to around 10 to 15 per day.
Over the years, her legs progressively and painfully bent upwards and sideways to approximately 45 degree angles. This is believed to be a secondary complication, possibly resulting from prolonged functional weakness or paralysis. Unfortunately, media reports such as those from the BBC and People magazine do not typically provide detailed clinical information. There is no discussion of rule in signs, specific FND phenotypes, or other neurological findings, so any interpretation requires a degree of inference.
Strangely, doctors reportedly could not straighten her legs, even under anaesthesia. She is now scheduled to undergo a double leg amputation as a last resort for pain relief.
Based on publicly available information alone, it is unclear how well this presentation aligns with typical FND phenotypes. While prolonged immobility resulting from functional paralysis has been reported to cause secondary contractures, this degree of fixed deformity is more commonly associated with organic fixed dystonia, chronic neurological disease, or severe untreated spasticity.
The two year hospital stay, following what was initially expected to be a four day admission, and ending in an eventual diagnosis of FND also raises questions. It suggests a prolonged period of diagnostic uncertainty, during which clinicians were unable to identify a clear organic cause. Whether the FND diagnosis was based on positive rule in signs or represented a diagnosis reached after extensive exclusion is unclear from the publicly available information.
Modern diagnostic approaches emphasise that FND should be diagnosed using positive clinical signs rather than simply because "nothing else fits." The absence of detailed clinical information in media coverage can make the diagnosis appear somewhat catch all. This does not mean the symptoms were not real, clearly they were, but it does leave unanswered questions about whether FND alone fully explains the case.
There does not appear to be a published medical case report available for independent scrutiny, making it difficult to evaluate the clinical reasoning behind the diagnosis.
So, should we infer that a theoretical abnormal brain process caused the contractures, which in turn caused the inability to move, that the physiotherapy team was unable to bring those contractures under control, and that, over several years, they resulted in permanent, tangible, and measurable damage?
Without access to full medical records or a detailed case report, it is not possible to know with certainty what occurred.
Megan's journey reflects both profound suffering and extraordinary resilience. At just 21, she has endured years of paralysis, loss of speech, relentless seizures, and now faces double leg amputation in the hope of gaining pain relief and greater independence. She has also spoken about her hopes for the future, including training as a nail technician and moving into her own home. Her determination through rehabilitation and her positive outlook are genuinely inspiring.
Regardless of diagnostic questions, Megan and her family deserve compassion, respect, and the best possible support. We hope the upcoming surgery brings her meaningful relief and opens the door to a brighter quality of life ahead.
