Functional Neurological Disorder, The most common Disorder you've never heard of

Functional Neurological Disorder, three words that don't even look like they need to be together. You would immediately think that "Functional Neurology" wouldn't be a disorder. Yes, the name is a bit misleading to the average population but it does make sense. Functional Neurological because the Hardware, eg the Brain, spinal cord, etc is all structurally intact however the Software running on it is broken. In FND, the Software running the persons behaviour, emotions, pain signals, everything is broken. Arguably, the fact that the software, the signals being sent is broken is more frightening. That mean's there is not a Pill, surgery or Therapy that can cure it. But what is it? What does it mean for the Patients?

Hey, My name is Abe, I'm a 25 year old Student who was Diagnosed with FND (with Psychogenic seizures) back in 2019. Leading up to 2019, I had a lot of Symptoms that no Doctor or specialist I went to could explain, I had lost patches of sensation down my left side, I was starting to forget things, I was in constant pain all over my body, to the point I couldn't even point to you on my body where the pain was, it was easier to ask where the pain wasn't. I also suffered Seizures, both Absence Seizures and Psychogenic Seizures and in Early 2019 I had an experience which brought the whole picture into frame.

Much like many people nowadays, especially at my age, I'm perpetually online. Most of my friends are online and I often join Discord and Teams calls for both University and for a random chat. So I thought it was a good time to go get a webcam from Curry's, a store in the UK that is akin to BestBuy/GeekSquad in the United States. It was a normal day, I got up early, like I usually do and left to go to the Mall that is around 25 minutes up the street from my house. It was a nice day, surprisingly given its Scotland and usually pissing it down. I got to the store, grabbed the webcam, paid like normal and then... I froze walking towards the exit. My vision blurred, the noise around me became muffled, it was like being stuck in a Frosted glass shower. I couldn't move my legs, my hands went numb and despite the fact that I could still see and hear everything. I couldn't ask for help, I couldn't do anything at all. This was a derealization attack, a new symptom, one I had no history with. I had heard of them but never seen one or had one. This wasn't a symptom or experience I could disguise or hide.

I got home and immediately called my Doctor, demanded I have an appointment that day to discuss all the symptoms, the pain, the derealization, the seizures, numbness, forgetfulness, everything. My doctor at the appointment did a quick check over, lifted my trouser legs, took off my shirt and closed my eyes. She randomly poked different parts of my back, legs, arms, shoulders, even my neck. I could feel around 40%, 60% I couldn't, which is double weird considering she had cold hands and of the ones I felt, I flinched from the cold.

My doctor found the lack of sensation, obviously concerning and decided to check my reflexes, did the knee thing with the hammer, one knee kicked out, the left one didn't. Didn't move an inch, in fact, I didn't even feel the hammer. Checked the forgetfulness, asked me info she knew and that she knew I knew. She asked me what my dad's first name was, no response, I knew his name started with the same letter as mine, but couldn't remember. Asked me for my number, I knew that immediately. Asked me the first address I stayed at as a kid, I remembered the flat/apartment number but not the street. She threw a curve-ball and asked what the Maltese word for Owl is, I remembered that immediately and said "Kokka". She was weirded out, its weird to see an experienced doctor puzzled by something that seems so normal to you. She looked at me and said "You somehow remember Numbers, Maltese and have forgotten almost everything else. I want you to do an MRI", She booked an MRI for around 2 weeks after.

I went for the MRI, I quickly learned that MRI's are not built for 6ft 2, burly men. That wasn't comfortable at all. I was in the MRI for around 45 minutes, managed to have a snooze (pretty sure there's at least a frame of my MRI records of me snoring with my mouth open) only reason I remember that is cos my Polish Radiologist was cackling with laughter when I woke up. My MRI's were normal, even if the MRI images were not (snoring skeleton).

Went back to my Doctor, again she's very puzzled and said she was going to refer me to a Neurologist. So I was sat around waiting a few months for a letter telling me which Neuro I was getting and when I was supposed to go. Got the letter around 4 weeks later and at this point it was October of 2019, my appointment was the 12th November 2019.

November 2nd rolls around and I get a phone-call from the Neurology Department Secretary saying that they have a Neurology Appointment free the day after on the 3rd and asked if I wanted it. I took it, better sooner than later. I went to the appointment, Neurologist does the exact same tests, looks at my MRI's and slumps back in her chair, smirks and says "Do you want the Good news?" and I nodded, she said "You have Functional Neurological Disorder" and I looked back confused like "Whats that?".

She explained that FND, is a software malfunction. Stress, both Psychological and Physiological stressers overload the body and people who are Genetically pre-disposed to it, develop FND in response to those stressers. FND is formed as a kind of response to a Physiological or Psychological Trigger and can resort in either Mild symptoms, Severe symptoms from onset or they get worse over time. She told me that she'd try to schedule another appointment for another few weeks to look at options for Treatment and Management... But then Covid happened.

Fast forward to 2021, and I've seen my Neurologist again, on quite a few occasions, my symptoms have progressed and I can no longer walk completely independently. But, Just now on Imipramine with the Option later on for going on Pregabalin for the pain and the rest of the Treatment is management. Avoiding overly stressful and random environments to stop derealization and Psychogenic seizures where possible (fortunately working from home is an option).

I'm planning on getting a wheelchair, I have an appointment scheduled to go get one. I don't plan on using the wheelchair all the time, It's mainly when I leave the home because at home I have a cane I can use and I can manage the odd stumble over at home. But out and about I can't really manage that. I also want to get a gym membership at the gym near me that caters to disabled people and veterans. I've made a rule for myself that the second the wheels of my wheelchair hit the floor of the gym. I have to stand up, walk independently so that I don't get too reliant on it.

If you want to learn more of the medical side or maybe you see a bit of yourself in what I'm saying, I recommend checking out either FNDHope or Neurosymptoms. FNDHope is a a charity set up by FND Patients and Neurologists who want to provide support, advice and conduct research on FND. Neurosymptoms was set up by a Neurologist at the hospital I go to, to provide Support and knowledge on FND as a whole, he's a Expert on FND.

Neurosymptoms: https://www.neurosymptoms.org/en_GB/

FNDHope: https://fndhope.org/