Patient story
Shared stories from people describing their experiences with Functional Neurological Disorder (FND), including symptoms, diagnosis journeys, and day-to-day impact.
Maddie Aumann: From an FND Diagnosis to Maddie’s Law
FND Nope
Moderator
Maddie Aumann was diagnosed with FND before genetic testing identified a rare SCN9A disorder. Her mother, Christine Aumann, describes how the FND label continued to affect Maddie’s care even after that discovery, ultimately helping inspire Maddie’s Law.
My journey with severe FND
Liam Virgo
FND advocate
My journey with FND began in 2016 when I was 13 years old. My physical and cognitive abilities were rapidly deteriorating. I had to leave school as it was no longer safe for me because of my sudden deterioration. I then lost the ability to walk and talk.
Diagnosed with FND at 13, Eight Years Later Doctors Found a Chiari Malformation and Spinal Cord Syrinx
FND Nope
Moderator
Daniele Gray lost the ability to walk at 13 and was diagnosed with Functional Neurological Disorder. Eight years later, an MRI revealed a 20 mm Chiari I malformation and a spinal cord syrinx requiring surgery. Was the underlying neurological condition missed?
Another case of Lyme disease attributed to FND, due to negative Lyme testing
mel
Convalescent
Maja Bagdziun shares her story with LDUK, after being given “a confusing FND label” because she tested negative for Lyme infection.
Diagnosed With FND, Died From a Pulmonary Embolism: The Questions Allison Lawlor's Story Raises
FND Nope
Moderator
Allison Lawlor lived with severe neurological symptoms, received an FND diagnosis and later died from a pulmonary embolism. Her story raises important questions about diagnostic uncertainty, thromboembolic risk and why patients owe no loyalty to a diagnosis.
Diagnosed With FND. It Was Buerger's Disease. She Lost Her Leg
FND Nope
Moderator
Danielle Thomas reported numbness, worsening walking difficulties and legs that felt like they were dying. Doctors diagnosed FND. Months later, vascular investigations revealed blocked arteries, gangrene and Buerger's disease. She eventually underwent a below-knee amputation.
Diagnosed With FND After Losing Her Daughter. Years Later, Elly Had 15 Brain Lesions and Multiple Sclerosis
FND Nope
Moderator
Elly Littlejohn was diagnosed with FND after losing her daughter to a drunk driver, despite abnormal MRI findings. Years of worsening symptoms, additional brain lesions and abnormal spinal fluid results eventually led to an MS diagnosis. Her story raises serious questions about diagnostic anchoring, trauma-based assumptions and delayed treatment.
Diagnosed With MS, Then Misdiagnosed With FND. It Was Parkinson’s.
FND Nope
Moderator
Emma Tinkler already had multiple sclerosis when worsening neurological symptoms were labelled FND. After two years of deteriorating mobility, a second neurologist diagnosed Parkinson’s disease. Six weeks after starting medication, she was walking normally again.
Three Seizures, Three Accents, One FND Diagnosis: What Was Actually Ruled Out?
FND Nope
Moderator
A musician developed changing accents after reported seizures, a head injury and cardiac arrest. Doctors diagnosed FND. But what neurological explanations were investigated, and what evidence supports the diagnosis?
Four Years Diagnosed With FND Before a DaTscan and Parkinson's Diagnosis
Reddit Stories
Social media
A Reddit user reports spending four years diagnosed with FND before receiving a Parkinson's disease diagnosis following a DaTscan. They say appropriate medication improved their condition, raising questions about the original diagnosis and the consequences of delayed investigation.
From PNES and Suspected FND to C1 Paralysis: Amy Wang-Hiller's Story
Facebook Stories
Social media
Violinist Amy Wang-Hiller describes how suspected FND, a PNES diagnosis and repeated psychological attribution allegedly delayed recognition of tethered spinal cord, cervical instability and progressive paralysis.
