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
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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.
Two Years Diagnosed With FND Before Autoimmune and Genetic Findings Emerged
Reddit Stories
Social media
A Reddit user reports spending two years diagnosed with FND and anxiety before investigations reportedly identified autoimmune and genetic neurological conditions. Their experience raises questions about overlapping symptoms, diagnostic closure, and why complex presentations may be interpreted as functional.
FND Diagnosis Reversed: Autoimmune Basal Ganglia Encephalitis
Reddit Stories
Social media
A patient diagnosed with FND reports that a second opinion revealed autoimmune basal ganglia encephalitis. Their account raises questions about incomplete investigations, overlooked neurological findings and whether an unexplained illness was prematurely labelled functional.
Jo Puckett's FND Story in the Daily Mail: Questions Worth Asking
FND Nope
Moderator
A Daily Mail article about Jo Puckett's experience with FND raises questions about diagnostic certainty, psychological distress, medical dismissal and the difference between wanting answers and wanting to remain ill.
My daughter
I would like to share my daughter’s story and what Functional Neurological Disorder has done to her life over the past three years.Before FND, my daughter was a creative, talented teenager who loved music, performing, makeup and hair. She had dreams for
She Asked if It Was Hemiplegic Migraine. Her Neurologist Diagnosed FND
Reddit Stories
Social media
A Reddit user describes recurrent episodes of one-sided paralysis that were diagnosed as FND. She says she raised hemiplegic migraine herself but it was rejected. Three years later, a headache specialist diagnosed chronic hemiplegic migraine, and she reports substantial improvement with migraine treatment.
FND Diagnosis Followed by Myasthenia Gravis and Respiratory Failure
Reddit Stories
Social media
A Reddit user questioned their FND diagnosis while being investigated for myasthenia gravis. Weeks later, they reported respiratory failure requiring intubation, an MG diagnosis and treatment with IVIG and plasma exchange. A later FND specialist assessment reportedly found no FND symptoms.
What I Wish I Knew When I First Got Diagnosed With FND
I was diagnosed with FND 2 years ago, with symptoms first appearing 3-4 years ago. I am a female in my 20s. Here are a few things I wish I knew when I first got diagnosed (these are all just my opinions based on my experience, they are not facts)clinician
Gaslit, Misdiagnosed, Then Heard: Living With MCTD, Small Fiber Neuropathy, and Dysautonomia
Facebook Stories
Social media
A reader shared this account from a woman misdiagnosed with FND who later learned she had mixed connective tissue disease (now lupus), small fiber neuropathy, and dysautonomia. She writes about autoimmune effects on the nervous system, getting a second opinion, and finding doctors who listen.
Diagnosed with CNS lupus after initial FND diagnosis
Facebook Stories
Social media
A young woman with lupus and Sjögren’s was diagnosed with FND without an EEG, spinal tap, or extensive laboratory testing. Further investigation at another hospital revealed a previous stroke and autoimmune abnormalities, leading to a diagnosis of CNS lupus.
Three Heart Conditions Misdiagnosed as FND
Facebook Stories
Social media
A 38-year-old patient diagnosed with FND after limited testing was later found to have three treatable heart conditions that explained their symptoms, including extreme daily heart-rate fluctuations previously dismissed as anxiety.
