From PNES and Suspected FND to C1 Paralysis: Amy Wang-Hiller's Story
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Professional violinist Amy Wang-Hiller has shared her experience of progressive neurological deterioration, multiple structural diagnoses and what she describes as years of inappropriate psychological attribution. Her account includes a particularly troubling allegation: an early suspicion of Functional Neurological Disorder (FND) arose partly because a resident observed her playing the violin.
In a Facebook post, Amy describes how that suspicion subsequently influenced her care, while her neurological function continued to deteriorate. Her more detailed account, From Tethered Spinal Cord to C1 Paralysis and Five Years of Being Told I "Didn't Add Up", documents the conditions eventually identified and the interventions she underwent.
From Seizure-Like Episodes to Progressive Paralysis
Amy's neurological deterioration accelerated in late 2020, when she began experiencing abnormal head movements, autonomic disturbances, drop attacks, seizure-like episodes and temporary right-sided paralysis. After epilepsy was reportedly excluded, her episodes were classified as psychogenic non-epileptic seizures (PNES), and she was directed towards trauma therapy.
She disputes that diagnosis, explaining that the episodes were subsequently understood as dystonic storms associated with her spinal cord injuries. She also describes receiving an FND indication after a resident observed her playing the violin. According to Amy, clinicians additionally relied on the absence of upper motor neuron signs while she was taking baclofen, a medication used to reduce spasticity.
Neither playing the violin nor an absence of particular examination findings, considered in isolation, establishes FND. Amy's account does not provide the complete original neurological examination, so the precise reasoning cannot be independently assessed. Nevertheless, her description raises a legitimate question about whether the diagnosis was supported by specific positive signs or by assumptions about what somebody with neurological disease should be capable of doing.
Structural Disease and Continued Deterioration
In 2021, Amy was diagnosed with Ehlers-Danlos syndrome (EDS), a connective tissue disorder associated with joint instability. However, her neurological problems continued to progress. She describes losing mobility in her legs, followed by worsening upper-body weakness, bladder and bowel dysfunction, and respiratory difficulties. By December 2021, she reports having lost motor function from the chest down.
Subsequent investigations reportedly identified abnormalities including a torn right alar ligament, abnormal nerve conduction findings and severe cervical instability. Amy also describes a tethered spinal cord associated with injuries around T8–T10, alongside instability affecting the upper cervical spine and lower cervical segments.
She underwent surgery for median arcuate ligament syndrome in 2022, tethered cord release in 2023, and extensive cervical decompression and fusion in March 2024. According to her account, advanced imaging and specialist neurosurgical assessment eventually identified structural abnormalities that had not been adequately addressed during her earlier care.
These findings do not independently establish the cause of every symptom she experienced. They do, however, demonstrate why her account cannot reasonably be reduced to an unexplained collection of complaints. She describes identifiable structural pathology, progressive neurological disability and substantial surgical intervention.
When a Diagnostic Label Follows the Patient
Perhaps the most consequential part of Amy's Facebook post concerns what happened after FND was first suggested. She alleges that subsequent clinicians adopted the possibility without adequately escalating investigations, leaving her to seek specialist neurosurgical expertise outside the original healthcare system.
"Then there are habitual diagnostic process once one says possibly FND with other providers playing into the hands of stopping the escalation for testing that I needed for neurosurgery outside of that system."
Her account describes a diagnostic cascade in which an early attribution allegedly influenced later clinical decisions. Rather than treating progressive paralysis, autonomic dysfunction and new neurological findings as reasons to reconsider the working diagnosis, she reports that the earlier interpretation continued to shape her care.
She also describes another form of diagnostic overshadowing: once EDS was identified, some symptoms were attributed to that diagnosis without adequately investigating the mechanisms behind her worsening paralysis. The problem, in her telling, was not confined to FND. It was the repeated tendency to treat an existing diagnosis as a sufficient explanation for new deterioration.
The Consequences Did Not End With Surgery
Amy reports that her condition remained severe after cervical fusion. Her recovery included prolonged ventilator dependence, episodes in which she remained conscious but could not move or respond, and serious complications involving swallowing, allergic reactions and hospital admissions. She describes these episodes as motor arrest associated with brainstem dysfunction, although their precise mechanism cannot be established from her account alone.
In her Facebook post, she states that the earlier FND attribution continues to affect how clinicians respond to her deterioration. This is particularly concerning because the identification of structural disease does not necessarily erase a previous diagnosis from medical records or prevent it from influencing subsequent assessments.
"Lately I got worse, and the backlash in the medical space is even worse because the prior FND"
Her experience raises a question about diagnostic reassessment: when substantial new evidence emerges, what happens to an earlier diagnosis that may no longer explain the patient's presentation? Amy alleges that the answer, in her case, has been continued suspicion rather than meaningful reconsideration.
Why This Story Matters
Amy's account is particularly relevant because she identifies specific decisions she believes contributed to the delays: interpreting her ability to play the violin as an indication of FND, relying on examination findings without adequately accounting for baclofen, classifying dystonic episodes as PNES, and allowing the earlier diagnostic attribution to influence subsequent investigations.
Her story is a first-person account rather than an independently verified clinical case report. The original neurological assessments, imaging and operative records would be needed to establish exactly which findings were available to individual clinicians and whether particular decisions represented diagnostic errors. Her reported structural diagnoses also do not, by themselves, prove that every earlier functional attribution was incorrect.
Nevertheless, Amy describes a serious problem that deserves scrutiny: progressive neurological deterioration occurring alongside a diagnostic label that she believes discouraged further investigation. The relevant question is not simply whether clinicians initially recognised a rare condition, but whether they reconsidered their conclusions when the patient's presentation changed and new evidence became available.
Today, Amy advocates for patients with complex neurological and connective tissue disorders through the InclusiVibe Foundation, which she founded. She hopes to contribute to research documenting patients' experiences and reducing delays in diagnosis.
Her own words capture the central issue:
"The FND itself should have been diagnosed with positive signs."
That is the question her account leaves behind. If a diagnosis was originally suggested without adequate positive evidence, and subsequent structural findings were identified, why should the earlier attribution continue to govern how the patient is assessed?
Sources
- Amy Wang-Hiller. From Tethered Spinal Cord to C1 Paralysis and Five Years of Being Told I "Didn't Add Up." Medium, originally published December 2025, updated August 2026.
- Amy Wang-Hiller. Personal account of FND attribution, PNES and delayed neurological investigation. Facebook group post, September 2026. Access may require group membership.
Please note: This post discusses an account shared publicly on social media. The person's medical history and diagnosis have not been independently verified. We report what they said and link to the original source where possible.