Functional neurological disorder: Investigating an invisible illness

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Loretta had been hoping for a promotion. Instead, she woke up one morning to find that her entire left side, from her face to her leg, had stopped working. A&E suspected she’d had a stroke, but a battery of tests revealed nothing. Six weeks later, Loretta was still housebound. “I would have some days that both my legs were completely numb,” she explained. “My right arm would just not work, two days a week, and I was unable to write or hold a pen.”

Loretta is one of many patients with functional neurological disorder (FND). Around a third of all patients in hospital medical clinics experience a form of FND. It is a disorder of the nervous system in which there is no damage or disease, but patients exhibit symptoms ranging from limb weakness or numbness to shaking, blackouts, and dissociation – feeling like their limbs are not part of them. Symptoms arise from issues with how the brain processes the information. Essentially, the problem lies either in how the brain sends messages to the body or how it interprets the messages it receives. Such changes aren’t physical, which is why they cannot be detected through conventional tests such as MRIs.  This is a software rather than a hardware problem.

Because of this, FND is a stigmatized illness. We still don’t understand why or how symptoms develop, and many doctors are reluctant to give an FND diagnosis, fearing they are making a mistake. Clinicians may suspect the patients are faking it, and patients themselves worry that they are imagining it.

Becky was in her early forties when, like Loretta, she suffered sudden onset left sided weakness. A few weeks later, she started having seizures. Over the next few years she experienced many strange symptoms: she would weep constantly for months from her left eye only; she would have sudden bouts of dizziness or flooding head pain. Every so often she would relapse, losing her muscle strength and seizing over and over. Her doctors were at a loss to explain her symptoms and couldn’t offer her a prognosis. “There seemed to be an unwillingness to debate or define what was happening and as with so many other sufferers, my family and I had become more marginalized and isolated,” she said. “We very much felt we were ‘out on our own’ and left to deal with whatever may happen next.”

In an effort to better characterize FND, researchers from the University of Edinburgh and the University of Groningen, Netherlands, performed a follow up study of over 100 patients with functional limb weakness, recently published in the journal Brain. This is the largest study of its kind, with the longest follow up period. The researchers aimed to provide clearer evidence regarding the prognosis of functional limb weakness, the rates of misdiagnosis and the long term consequences of this disorder. The study showed that 80% of the patients with FND still experienced symptoms in their limbs an average of 14 years after their initial diagnosis. This clearly demonstrates that FND is a persistent and disabling disease. Professor Jon Stone from the University of Edinburgh’s Centre for Clinical Brain Sciences, who was involved in the research, explained: “This study shows the importance of neurologists staying involved with the long-term management of patients to guide treatment and detect additional neurological conditions, which can rarely occur years after the start of FND.”

Importantly, the study found that misdiagnosis was extremely rare, with only one patient clearly misdiagnosed. The researchers further showed that FND was associated with a higher than expected mortality rate. “[This study] should also help clinicians provide a more realistic prognosis for patients with FND when it causes limb weakness, and stresses the importance of active and targeted treatment which many of these patients didn’t have,” concluded Prof. Stone.

Indeed, there is hope for FND patients. With a more widespread understanding of this disorder, they will be able to get the assistance they need. Fourteen months after her first symptoms, Loretta had not regained full use of her hands or legs. She was in chronic pain and had difficulty controlling her bladder. “I have a mobility scooter and a wheelchair to use, and these have become my new best friends,” she said. “I may get a mobility car, to help me be able to get out the house by myself and hopefully get my independence back.” Since there is no permanent damage to the brain’s hardware, further research may uncover ways to reboot the software. Becky eventually became one of Prof. Stone’s patients. After three weeks of intense neurophysiotherapy, her seizures subsided. Using crutches, she was able to walk small distances, and she could finally eat a meal without extreme exhaustion. “There is no cure, but there is treatment,” she explained. “[There are] no guarantees, no quick fix, no magic medication, but with hard work, a slow, painful process could begin whereby those errant parts of the brain that had stopped communicating could begin to talk once more.”

This article was written by Helena Cornu and edited by Miles Martin

6 thoughts on “Functional neurological disorder: Investigating an invisible illness

  1. Hulya

    I am like Loretta and still waiting doctor referal since November 2018 🙁

    1. News

      There are so many illnesses that can’t be quickly identified under a microscope, but they are very real for people like you who suffer.

      I sincerely hope you get your referral and find some relief. I wish I could help. – Miles

      1. Anja martin

        I got diagnosed with fnd 2015 since lock down it got worse and of course new symptoms popped up..I feel alone I use a walker with wheels. .I’m now petrified of stairs on severall ocations my legs given way because trying to fight the sensation of it being some else’s legs your brain misinformation and I end up falling also drag my right leg ..the scary seizures as I explained it a tremor gets stuck or a body reboot but afterwards so tired and headaches for days but I also have eatng thing where I tremor in throat out of nowhere I choke on whatever I eat or changing of voice can be hoarse or it sounds like I’m crying which on a phone sounds awful ..inner tremors ..I feel it but no one can see of course my walking I been accused of being drunk so many times it became a anxiety in it self it’s not how we all this I have bulget in my neck and back problems also due to depression that’s also got worse I’m also mother of four I been reported to social services also first time I went into hospital with a seizure I had a paramedic literally sat on my arm trying to take my heart trace .she was shouting at me to stop moving see thing is you mention mental health they think it’s that and fog it off took three years but the neurologist was just interested in just what he could see it also fell in the clinic. I been ridiculed for using a wheelchair which bought myself tremoring in itself is tiring and it hurts !!we should be allowed to get help with that not be abused for getting one was i suppose to get around especially being a mum ..GPS should also protect fnd sufferers with a letter to carry around with us tremor affect your sleep and how does a women who has full body tremors able to have a smear I avoided mine it’s bad your left to deal with it on your on own battle against health authorities especially when I had rehab to walk they complained I brought my own wheelchair but did not offer help just in case I needed it were having to deal with in our own way because not a obvious condition it is a mimic condition which I see like MS and parkinsonism. . And also what we suppose to do when we have covid test we can’t sit still ??

  2. June BARBONE

    My grandfather had epilepsy and narcolepsy. .do you think it is a vaccine injury caused by heavy metal poisoning of the brain? I think it.may be ..
    Has she tried detoxing?

    1. News

      Hi June. We did not interview Loretta personally (this was written from a press release from the University), so I’m not sure what she may or may not have tried.

      We can’t predict the precise cause of her illness; that’s what’s so challenging about it! However, scientific research suggests that metals in vaccines do not cause brain disorders because they are present in the vaccine in concentrations far below the risk threshold. The benefits far outweigh any theoretical risk. I’ve linked a resource from the Centers for Disease Control as well as to the research it cites.

      Best wishes – Miles

  3. Thank you for raising awareness about this devastating condition. So much needs to be done to help those suffering. I also have FND, but have managed to recover my function. Everyone is different, so I don’t claim to have all of the answers, but I recently started a blog to share the things that have worked for me.

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