New diagnosis: Functional Neurological Disorder

I am not a medical professional. I have no medical training and cannot offer medical advice. This is my story and my personal experiences.

I finally got a diagnosis: Functional Neurological Disorder

My MRI was clear which is great news, pretty much expected as it’s more of a kind of muscle connection issue where my brain will ask my right side to do something and then it just doesn’t. The best explanation he gave was like with a computer when the hardware is fine but the software keeps glitching. So my scans were all normal but my brain and nervous system are misfiring, misinterpreting and over reacting to certain stimuli. Often it can be a trauma response because your brain puts you on such high alert for so long.

FND includes two main categories Functional movement disorder (motor FND) – which I struggle with – and Psychogenic nonepileptic seizures (PNES) – which doesn’t affect me. The symptoms of motor FND general affect the movement of the body can include:

• Leg and arm weakness or paralysis

• Tremor

• Sudden, brief involuntary twitching or jerking of a muscle or group of muscles (called myoclonus)

• Involuntary muscle contractions that cause slow repetitive movements or abnormal postures (called dystonia)

• Problems with walking motion (gait), posture, or balance

• Spasms and contractures (where the tendons become fixed in awkward or uncomfortable positions)

• Muscle stiffness

• Tics

Other symptoms that impact brain function can impact those with either an FND or a PNES diagnosis include:

• Speech difficulties, such as sudden onset of stuttering or trouble speaking

• Problems with seeing or hearing

• Pain (including chronic migraine)

• Extreme slowness and fatigue

• Numbness or inability to sense touch

I feel pretty positive about finally getting a diagnosis (the accident was October 2018) because there clearly was a problem with my functionality so it wasn’t as if I wanted there to be something wrong with me but there was something wrong and I wanted an answer. It’s hard to explain but hopefully that makes sense. But to know that this isn’t all just in my head and I don’t just need to ‘try harder’ as I was told time and time again has been helpful. It also means I can start looking at reworking things like physio as some of the stuff I was doing was actually making FND worse instead of better. I am frustrated that I have waited so long to get answers and the longer my brain and nervous system has been stuck in that high alert mode and over reacting to problems the worse things have got which makes it harder to fix.

But just so so grateful to have had access to private healthcare! The doctor was really good too. After all I was referred to the NHS neuro in July. I am still on the NHS waiting list which is good because the experts in FND in Scotland only do NHS. So that’s frustrating in a way because it means more waiting but at least I am roughly 8 months further up the wait list. So no treatment plan yet. But my neurologist is going to share my notes, scans and diagnosis with my NHS team and hopefully that might help me get some help as I don’t need the original consultation and scan.

To take a step backwards I am going to explain the background to my diagnosis and the symptoms I was experiencing. I think that’s important because perhaps my story might help someone else on their health journey or so readers can better understand what Functional Neurological Disorder is. On top of that this is my story and my truth. So let’s go back to October 2018.

I was knocked off my bicycle by a minivan whilst cycling in London. I was wearing a helmet. I was taken to hospital by ambulance but the care I received in A&E was patchy at best. The main injury I sustained was an ACL tibial spine avulsion injury in my right knee. This was not picked up until about a week after the event. I have had a partial knee replacement and a total of four surgeries. As well as this I blacked out at the scene of the accident and was drifting in and out of consciousness and then I blacked out again when I was in A&E. No head checks or scans were done at the time.

I continue to struggling hugely with the physical and mental effects of the accident. I have been doing physio almost constantly since the end of 2018. I was told time and time again that if I worked hard on my physio and did not overthink my exercises that I would eventually be ‘back to normal’. However this has not been the case. Especially with Covid and the fact all my healthcare has been online it has taken longer, a lot longer, for my continuing struggles to be picked up my medical professionals.

My main symptoms are:

Vision: Long sighted; Much better vision in my left than right eye; Struggles with moving my right eye.

Coordination: I struggle with fine motor skills on right side especially with my hands and fingers; Can struggle with accuracy in exercises like touching my nose with my finger and then touching a point in front of me. In my horse riding there are various actions I struggle with such as passing my whip from hand to hand. In swimming I struggle to get into a rhythm and match my right and left leg, this is worsened by the fact my left side is stronger than my right.

Balance: I can balance much better on my left side than my right side for example when standing on one leg. I struggle to walk along a line placing one foot in front of the other heal to two with my right

Sensation: I have reduced sensation on my right side but especially from my thigh downwards. I have less sensitivity to temperature on my right side most notably from my knee downwards.

Mind muscle connection: This one is hard to explain but my left side responds normally to what my brain asks it to do such as moving my leg. But with my right side sometimes my body doesn’t seem to respond to what I ask it to do. For example I will go to stand up and my right leg just won’t move and I’ll just be sitting there looking at it knowing that mechanically there is no reason it shouldn’t move.

Pain: I struggle with joint and muscle pain on my right side but especially in my knee and hip. Nerve pain is also a problem for me and I struggle with restless leg syndrome but it is in my mainly arms, sometimes spreading to my legs and much worse on the right side.

So there you have it. My FND journey so far. I don’t know what the future holds but I hope that I get a treatment plan and am able to make some progress. But even without that knowing what is going on has been so validating. You know your body best. If you think there is something wrong then keep advocating for yourself. Don’t back down or give up. I know it’s so hard (and it shouldn’t be as difficult as it is) but you deserve care and support.

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