State Rep. Tricia Byrnes Is Looking for the Filmmaker Who’ll Investigate FND
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Missouri State Rep. Tricia Byrnes is seeking a filmmaker to investigate Functional Neurological Disorder. She says hundreds of families report children were labeled with FND before doctors fully checked seizures and loss of mobility, and that second opinions were blocked.
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.
Medical dashboard version 1.0
FND Nope
Moderator
I developed and uploaded the first version of my wife's medical dashboard over the weekend, which highlights her medical history, such as blood tests, MRIS, etc.
Anecdotes, Bias, and the Bigger Picture
Christoff
Spousal caregiver
One of the most common and valid criticisms of a website like this is that it heavily relies on anecdotal evidence, meaning personal and subjective lived experiences. That is fair. This is, after all, a reflective journey centred around my wife’s health struggles.
Differential Diagnosis: Charcot-Marie-Tooth (CMT)
Christoff
Spousal caregiver
Charcot-Marie-Tooth (CMT) is a hereditary (genetic) disorder, not dental related as the name might suggest, that impacts the peripheral nerves, that is motor (movement) and sensory (sensation) nerves in the arms, legs, hands, and feet.
I encourage you to take your website down
Christoff
Spousal caregiver
Barely a week after launching this website and I already received my first calls to take it down.
Progression Demands Further Investigation
Christoff
Spousal caregiver
As soon as an FND diagnosis is made, the patient is thrust into a multidisciplinary treatment approach, which can include psychologists, psychiatrists, physiotherapists, and sometimes speech or occupational therapists, depending on how the disorder presents itself.
Cervical Stenosis, Hoover’s Sign, and Clinical Blind Spots
Christoff
Spousal caregiver
In Functional Neurological Disorder (FND), standard brain imaging (e.g. MRI, CT) usually appears normal, showing no structural damage, lesions, tumours, or other typical neurological signs, except when FND is comorbid with an organically confirmed neurological condition, such as multiple sclerosis, stroke, or epilepsy (like saying pain occurs alongside a bone fracture).
FND Might Be Nothing More Than a CNS Reflex
Christoff
Spousal caregiver
What do I mean when I hypothesize that Functional Neurological Disorder (FND) might be nothing more than a central nervous system reflex?
Using medication as a diagnostic tool
Christoff
Spousal caregiver
Over the centuries, doctors have devised a magnitude of methods to diagnose illnesses, from early clinical observations and skin prick tests, all the way through to X-rays, blood tests, ECGs, lumbar punctures, biopsies, mammograms, ultrasounds, endoscopies, stress tests, genetic testing, CT scans, MRIs, and functional imaging like PET scans, just to name a few.
The Dark Truth Behind the 4% Misdiagnosis Rate in Functional Neurological Disorder
FND Nope
Moderator
When presented with a misdiagnosis rate for FND of just around 4%, it sounds impressive - who wouldn’t be tempted to jump on the bandwagon? Surely this means doctors have the disorder all figured out, backed by mountains of rock-solid, empirically proven evidence. Right? A disorder that is believed to live on the fringes of neurology and psychiatry - what could possibly go wrong?
Who am I? Why am I doing this?
Christoff
Spousal caregiver
For the past seven years, my wife’s health has steadily declined, which forced me into research mode - diving deep into various medical fields through countless hours of studying medical journals, textbooks, clinical resources, and literature, as we were passed from specialist to specialist.
