Functional Neurological Disorder: The Hidden Brain Disorder Nobody Knows Of

  I would like to start this by saying that this is not an attack on any individual, organisation or media outlet, however I am within this post, going to speak about my own experiences and also touch on those that I have come to hear of within the media and through friends who also have the condition. 

Functional neurological disorder…most people have no clue at all what it is. That is because it is listed as a rare condition of the brain and nervous system. In fact, according to the National Organisation Of Rare Disorders (NORD) website; it is “a medical condition in which there is a problem with the functioning of the nervous system and how the brain & body sends and/or receives signals.” It is not like a stroke or multiple sclerosis which are structural disease processes, although many of the symptoms of functional neurological disorder (FND) do mimic those of a stroke and on rare occasions can turn out to be a stroke as the severity of the symptoms that occur can result in a stroke. Therefore it is vital that every symptom of FND be taken seriously and monitored as someone would do for a potential stroke patient.

I remember the day that my condition first reared its ugly head. I had just been to visit the neurologist earlier that week coincidently due to symptoms including headache, tingling in my arms and legs, tiredness, weakness and vision changes. It had been occurring for a while and was getting worse. I was diagnosed at that appointment with Hemiplegic Migraines. (I am not going to get into that for the purposes of this blog post, as it may be confusing due to its symptoms and you may wonder how can I differentiate between the two conditions in terms of my symptoms..but trust me when I tell you – I just can.) I woke up on the Sunday morning and I could not get out of bed. My right arm had become very weak, to the point where I couldn’t grip anything or even move my fingers. It was like willing my fingers and my arm to move was having no effect at all. I tried to speak and the words were slurred, one side of my face felt like it was falling off. My family were downstairs because I had slept in that morning. I managed to tell my husband what was wrong, and by this point I was panicking because I was convinced that I had suffered a stroke in my sleep. I managed to call an ambulance and I was then taken to hospital where I stayed for four days. Those four days were tough and scary, not only for me but for my husband too because we had no idea what to expect. We were bracing ourselves and knew it wasn’t going to be good. I was catheterized and tested for everything, all types of infections that could have possibly caused my legs to give up on me.. results coming back clear. Sent for an MRI scan of my brain & spine.. totally clear. We were getting no answers. On day three I was getting some feeling back in my toes. This felt amazing. We had waited so anxiously and because we had no answers at that point we definitely had no idea if i would get the feeling back in my legs. What a relief it was just to get that tiny bit of sensation. I was given support from the physiotherapists to try and stand using bars either side of me. I got up and fell down again but they picked me up and we did it again. By the fourth try, i just cried. I had gone from feeling determined to defeated and just wanted to hide. Once I’d had a cry, I decided to try again. This time, the ladies kept the chair as close to me as humanly possible once I stood up instead of taking it away to stand behind me. I managed to stand for about three seconds and slide one foot forward a tiny amount. It took every ounce of my energy to do this, but then I fell back into my chair and I was proud of myself. I knew that I would walk again. The doctor that had been overseeing my case had eventually diagnosed me with ‘medically unexplained symptoms’ it actually says this on my discharge letter. This I presume was either because of the tests coming back clear or because he decided he did not want to delve any deeper into what could be the cause so he labelled me with something utterly ridiculous. Then my neurologist came to see me. By pure luck he was on the ward and he had heard I was in, so wanted to see me as he had only seen me in clinic the week previous. After looking over the notes, tests, scan, doing a reflex exam and some other things he sat down with my husband & I. This is difficult to write and will always stay with me, he is the only doctor to have ever taken the time to actually hand out news and then stay. He first of all asked me what I thought was going on. I had thoughts of Multiple Sclerosis going around my head and asked him about it, he said no and explained why he thought it wasn’t that. He then said that he was giving me a diagnosis of FND and explained about it. The most prevalent part however, was the word wheelchair. He was explaining to me that for many people with this condition it does get worse and in the future I may need to use a wheelchair. As soon as this was said, I remember feeling like my whole life was shattering, I was thinking about all of the things that I had dreams of doing in my life like climbing mountains and how was I ever going to do that in a wheelchair. But I didn’t cry in front of the neurologist, we did that after. I just tried really hard to take in what he was saying to me. He spoke about medication and how it could help to slow things down so he wanted to start me on it straight away.

Going home was nice, to be in my own space, the rehabilitation period until I was fully back on my feet was seven days. I had been started on the medication straight out of hospital so I think that helped a lot. I used a walking frame until I felt confident again to walk without it. For a little while I noticed a huge difference in my symptoms due to the medication. It was a big relief as I started to feel like I was getting my life back. I would suffer symptoms such as slurred speech but it would be short lived and there would be times when I would lose my grip and drop cups and plates but nothing major. Then after about 6-9 months things got worse again. I could see a sharp progression in my symptoms, I started to lose feeling in my legs again, this time in public. Back to hospital, but sent home again. Doctors had no clue what FND is. I blacked out in the middle of the supermarket and woke up to no feeling in my legs..back to hospital. Sent home hours later because doctors say I am fine, paramedics on the way to the hospital had to research FND on their mobile phones because they had no idea what it is. Blacking out in the supermarket was interesting because it happened at the scan & go area. I was laying in the middle of the floor. My husband told me that people were just going about their business and one or two people even saw it as an inconvenience that I had become suddenly unwell, one man had uttered something under his breath about me being in the way. As time goes by I find that there are the nice few who will actually stop and help, the general populous that go about their business trying their hardest not to look so they can pretend it’s not happening and therefore they don’t have to help. Then there are the slim few like that man. Those who like to think that either staring, making comments or being really nasty in general is an acceptable way to treat someone who is clearly not in control of themselves. How I really hope they never have anything like that happen to them and need help. Then there is the media. I am not speaking from first hand experience on this, but I am part of a support group in which there are other FND sufferers. It is amazing to me how misrepresented our condition has been recently and how because of that, the public now perceive FND to be nothing more than something inferior and made-up. There was recently an interview conducted and released by The Daily Mirror where a mother was forced to lie on the floor of an a&e hospital after being refused a bed. The lady suffers from FND and also a related condition called non epileptic attack disorder (NEAD) – she was having seizures on the floor and was still refused a bed! None of that is acceptable. In the article it has been portrayed as though FND and NEAD are mental health conditions. They are not; the lady suffers with mental health conditions separate to these conditions, which is why the crisis team were at the hospital. As a result of this misrepresentation and the media not doing their research, the lady has been branded a fake and hit hard with hurtful, disgusting comments from some members of the public. On top of that, from now on the only thing people will associate with when they hear FND or NEAD is mental health and the fact this lady was deemed physically fit due to a lack of understanding, education and compassion from doctors and nursing staff and this NHS hospital.

Please take it from me that FND is very real, it affects so many people in the UK – exact prevalence according to NORD website is unknown, however after headaches/migraines, FND is the second most common reason for neurology outpatient visits. It is as common as Multiple Sclerosis or Parkinson’s Disease. So why do so few people know anything about FND compared to these other illnesses? People with FND are feeling austrosised due to lack of understanding of their condition by others which then leads to unacceptable care in hospitals, misrepresentation in the media and discrimination. As someone living with the condition I ask you now that you know more about it, please spread the word and then maybe it will help stamp out some of the negative opinions people have gained. When you see someone in a wheelchair one day but walking the next; no they aren’t faking it.. today is just a better day than yesterday, today they can walk.

 

 

 

 

12 thoughts on “Functional Neurological Disorder: The Hidden Brain Disorder Nobody Knows Of

  1. Well done, you put everything across so honestly and accurately. We have to speak out ! We suffer and endure a great injustice.

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    1. Thanks Sylvia for your comment, yes we do i agree fully, it is time for us to stop being ignored and looked at like we are faking it or we have gone crazy. Because we haven’t, we are fighting a silent battle that is anything but fake x

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  2. Thank you for sharing your story. The fight is a giant monkey on the back, and some people in fact look at us like monkeys when we describe some of the symptoms. It’s a frustrating disorder, but glad there are people like you spreading the word, and raising awareness of its intricacies and the challenges we face. Each day we’re hoping to get closer to solving the riddle.

    God Bless

    Liked by 1 person

    1. Thank you Nellie, I agree it is frustrating and so much harder because it is far less ‘common knowledge’ as opposed to other conditions such as cancer or MS. We will keep going and one day hopefully there will be a nice scientist who will be willing to take on the challenge of looking into FND properly, so we can prove to the world what you and I already know x

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    1. Hi, thank you I am really glad you enjoyed it 💛 as you know with FND people often look at you weird when you tell them about it. That is why I wrote this. It is SO important to me that the general public and medical professionals know more, because I feel we are looked at like criminals almost sometimes? Not sure if you have ever felt that way. I’ll keep spreading the word if you will 😉💚

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    1. Thank you, I appreciate the feedback! I never can be sure if my writing is any good so it’s always nice to hear something back, glad you enjoy reading my stuff. Stay tuned, more coming soon 🙂 x

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