My Journey with Functional Neurological Disorder (FND)
As a nurse, I have spent years caring for people living with Functional Neurological Disorder. I have supported individuals through assessments, advocated for their needs, and witnessed the profound impact FND can have on daily life. I never imagined that one day I would be navigating the same condition myself.
How My Symptoms Began
My journey started suddenly on 17 November 2025, when I developed right‑sided leg weakness and loss of sensation. I went straight to A&E. Despite the junior doctors’ strike, I was seen quickly, cleared of stroke, and discharged with a provisional diagnosis of hemiplegic migraine. I was advised to return to my GP if symptoms didn’t improve.
Over the next two weeks, not only did my symptoms persist, but new ones appeared — dystonia and intense internal tremors. I returned to my GP and was sent back to hospital. MRI scans ruled out stroke, spinal inflammation, and migraine. Neurology requested a further MRI and assured me I would receive a phone call with the results.
That call never came.
Four weeks later, on Christmas Eve, I learned from a hospital secretary that I had been discharged without explanation.
Escalation and Uncertainty
My GP referred me to the neurology team in Southampton, and the referral was accepted on 2 January 2026. But by February, my condition had deteriorated significantly.
Seizures began. External tremors became severe and painful. I needed support with basic daily tasks — eating, drinking, washing, and dressing.
My mental health understandably declined as I tried to make sense of what was happening. In April 2026, during a discussion with my GP, it became clearer that a workplace incident in November 2025, combined with my history as a survivor of domestic violence, were likely contributing factors. Still, we needed specialist confirmation.
A Turning Point
On 28 May 2026, I experienced a seizure that left me with symptoms resembling a stroke: full right‑sided paralysis and facial droop. Much of that day is a blur; what I know comes from my husband’s account. The ambulance had to stop twice because I seized again. My first awareness was being moved for a CT scan.
I was admitted overnight. After assessments from physio and occupational therapy, SALT, and the consultant team, I was discharged with a working diagnosis of Functional Neurological Disorder.
Receiving the Diagnosis
On 2 July 2026, my neurologist formally confirmed the diagnosis. A plan was put in place:
Community neurological occupational therapy
Community neurological physiotherapy
A consultant review in six months
Finally having clarity brought relief — but it also marked the beginning of a new chapter.
Finding Support and Purpose
My feelings about the diagnosis have and continue to fluctuate, but I am fortunate to have a supportive husband, family, and friends who bring comfort and laughter on the hardest days. I have also found connections through TikTok and discovered FND Connect, whose resources have been invaluable in helping my loved ones understand the condition.
I have since signed up as a volunteer for their CIC, and I am passionate about raising awareness, supporting others, and helping people feel less alone in their journey.
Why I Share My Story
FND is real, complex, and often misunderstood. Sharing my story is my way of helping others feel seen, validated, and supported. If my experience can help even one person find clarity, compassion, or community, then it is worth telling.
Thank you for reading
Tricia Hughes
