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.