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.

An 11-year-old developed recurrent episodes of collapse, prolonged unresponsiveness, abnormal movements and post-event neurological symptoms, often after exercise or heat. Multiple EEGs failed to capture a typical episode, while two showed epileptiform abnormalities. Her episodes were eventually labelled FND/PNES. Her family is looking for others whose children followed a similar path.

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.

After years of worsening symptoms, repeated A&E visits and an FND diagnosis that never fully seemed to fit, a long-awaited MRI finally revealed cervical spine abnormalities that now require further investigation. This is a patient story about persistence, uncertainty and the importance of taking another look when something does not add up.

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.

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.

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.

After years of severe disability and an FND diagnosis, Sam’s family discovered a large, hidden abscess beneath a previously treated root-canal tooth. Within weeks of its removal and treatment, he began to regain his vision, mobility, clarity and independence. This is their story and a reminder that unexplained symptoms still deserve thorough investigation.