Northampton woman opens up about living with Functional Neurological Disorder

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A brain tumour was only the beginning of Nikki’s problems

Fifty-two-year-old Nikki Ullah, from Northampton, lived a healthy active life before one seizure turned her entire world upside down.

Nikki was preparing for New Year’s Eve celebrations in 2018 - cooking, cleaning, shopping for party food - when she suffered a seizure that left her with Post Traumatic Stress Disorder (PTSD).

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This led to the diagnosis of a brain tumour, which has since been removed, but this was just the beginning of Nikki’s problems.

Nikki Ullah, 52, suffers with Functional Neurological Disorder.Nikki Ullah, 52, suffers with Functional Neurological Disorder.
Nikki Ullah, 52, suffers with Functional Neurological Disorder.

Nikki, from Overstone, said: “I thought my shaking and spasms were because of the steroids I was given but, when I had the tumour removed, it got worse.

“I could not sleep; I was tearful and anxious all the time.”

Nikki described how her limbs are riddled with spasms and tremors on a daily basis, she struggles to remember things and the simplest of tasks leaves her fatigued.

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Nikki can no longer drive or do things she loves like baking and she has to use a stick, four wheeled walker or a mobility scooter to get around.

Her dog, Skye, is her constant companion. When Nikki’s spasms disrupt her sleep, Skye will often get under the bed covers with her and nudge her face and arms.

Prior to Nikki’s hospitalisation, Skye kept trying to eat Nikki’s hair on the right side of her head - where her brain tumour was. This stopped after the tumour’s removal.

Nikki has slept downstairs in her home for three years now because she is always falling over.

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She said: “If I try to do anything around the house, I am dropping things. If I go out shopping at Weston Favell shopping centre just walking around, fatigue will kick in and I will be sleeping on and off for the next two days.

“It is just not an easy condition to live with.”

Nikki’s husband sent a video of her spasming legs to a doctor and she was sent a leaflet about Functional Neurological Disorder (FND). Her neurologist then referred her to a specialist in Oxford, who confirmed Nikki’s diagnosis.

According to the NHS, FND is the name given for symptoms in the body caused by problems in the nervous system but are not caused by a physical neurological disease. Health professionals often refer to FND as “medically unexplained,” which is why there is a shortage of information about why symptoms occur and what to do about them.

Symptoms of FND include seizures, difficulty moving, memory problems, fatigue, difficulty concentrating and pain in the muscles and joints.

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Nikki is currently on medication to relax her muscles and she is receiving physiotherapy.

She believes she would have suffered a great deal less if there was more information available to her and is calling for more awareness on FND.

Nikki has been journaling her struggles since 2018 and she has joined an online Facebook support group called ‘The FND Fight For Freedom,’ which she said has helped her immensely. The group calls for better treatment for FND and consists of people from all over the UK, who suffer with the condition.

Nikki said: “It is something that would have been beneficial to me from the start to know I am not the only person going through this but there are hundreds.”