Let's Talk...
It was 2023 when I first started this journey. (It's a long journey, but bare with me). I remember walking back from swimming one day, midsummer, I think, and for some odd reason I stretched the left half of my top lip (yes, like an Elvis lip) I still don't know why, and it stuck there. Only for a second, but it stuck there. At the time, I wasn't all too worried; maybe I was overdoing my exercises, maybe I was undereating during my workouts, or dehydration; all sorts of things went through my mind about what it could be.
Every time I walked home from the pool, I would do the same thing, almost out of habit. It sort of amused me, at the time. A few weeks later, it started to worry me - but really not enough to go to the doctors or to see a professional. As with many of you, nothing indicated at the time what the next three years would be like.
A few months later, I was riding home on a bike from a friend's house. It was raining heavily, and I had a very heavy pack on my back. I was at the height of my fitness (I was 38 at the time) and felt great. As I was coming to a quiet junction on a road, a car pulled into the same side of the road I was on (I was on the correct side), and with nowhere to go, I had to swerve out of the way. I hit a very high curb and came tumbling off my bike. I scratched myself pretty badly, and though the driver showed some remorse, they drove off without ever getting out of their car to see if I was okay.
I got home and cleaned myself up, dried myself off. It hurt, but not badly, and I put it down to bad luck and stupidity on their part. Looking back, I honestly believe it was this incident that threw my nervous system over the edge. A few days later, completely out of the blue, the back of my head started to ripple, my first twitch. In a matter of hours, they spread, first to my left arm, then my left calf muscle, and then eventually into my right calf muscle. Endless, maddening, torturous fasciculations that went on for days and days. Over a short period of time, they attacked my legs, arms and torso ferociously. The calves, the knees, the ankles, the insteps. My toes cramped, my thighs buzzed. My lips had a life of their own. I remember my left peck twitching all day once. All day without any relief. There were deep cramps in my stomach. My eyes were puffy from the amount of incessant fluttering they were forced to be under.
One night, it felt like someone was rubbing the end of a pen up and down my legs - it was painful, and this is what forced me to at last go to the doctors.
Of course, when I went there, under observation, the bloody things decided to go away and leave me looking like an idiot. But my doctor decided to send me for some blood tests. After a while, they came back to say that I was folate-deficient. I remember sitting there, hearing that word — folate deficiency — and feeling something I hadn’t felt in weeks: relief.
Finally, there was an explanation. Something measurable. Something fixable.
All the chaos — the twitching, the cramping, the strange sensations that had taken over my body — suddenly had a name. It wasn’t something mysterious or sinister lurking in the shadows; it was a deficiency. A gap. A simple imbalance that could be corrected.
I clung to that.
I started thinking back over everything — the workouts, the diet, the long days, the sweat, the strain — and it all seemed to line up neatly. Of course. I’d pushed too hard. Not eaten enough of the right things. Let something essential slip through the cracks.
It made sense.
For the first time since that ripple at the back of my head, I felt like I was back in control. Like the ground beneath me had stopped shifting. Like this whole thing — this bizarre, creeping storm in my body — had an endpoint.
But the twitches kept going - despite having a course of folate medication.
I went back to the doctors, and I used that fateful phrase 'I think I am having health anxiety' - music to a doctor's ears. I was, then of course, to them, anxiety-ridden and no matter how much i tried to explain that I wasn't and that the faciculations were making me anxious, not the other way around, the more I sounded crazy.
And of course, the twitches hid away every time I had an appointment - even videos that I took didn't convince her.
Eventually, I started to get extreme numbness in my left hand, and my doctor scheduled an appointment with a Cubital Tunnel Syndrome specialist. She at last surrendered.
Feeling my plight and seeing nothing that indicated CTS, the specialist booked me in with a neurologist, the wait for an appointment. 12-friggin-months. That's right, a year.
It's been a long year. With lots of ups and downs. Over that year, though, I broke through the fear of having something worse, that horrible, awful condition that is extremely rare, MND. I broke through the strange, weird way your body, your mind, tells you have all these awful things; I clearly didn't. Brain tumour, when I saw flashes in my eyes, bowel cancer when my tummy was upset. I even thought I had bone cancer at one point. Your mind tries desperately to explain your condition, a condition that is, really, anything but benign.
Some days my faciculations would be awful. 24-hour twitching, cramps, pains in my legs, enough for me to not be able to walk some days. Weakness is my legs, arms and torso. Other days were a relief - nothing but a small flutter, sometimes nothing at all. I tried all manner of medications and supplements from sertraline to pregabalin. Nothing stopped it for good - in fact, the pregabalin turned me into a complete zombie for months and months. The summer of 2024 was a complete blur.
12 months of a revolving door of waiting, thinking and hoping.
In May 2025, I moved in with my partner in Brighton. Something changed. I was no longer fixating on my legs. I had things to do, someone to chat to and interests to pursue. I began to think less and less about the twitching and more about positive things - more about the good things in life, not the bad. Over the course of last summer and the winter, the twitches subsided massively, almost to nothing, and while my legs will never be the same (I still suffer some perceived weakness and pain (my knees are shot to bits) and I have a general loss of "strength" in my lower limbs for sure, my faciculations have faded to almost nothing.
I certainly feel that my mental health has changed; my outlook on life is different. I see life differently since the start of this journey for sure.
I had my MRI in January (clear), my bloods done for my neuro in the same month (clear), and tomorrow I have my EMG and NCT. I suspect they will come back with an all clear too.
We are all on this whacky, twitchy journey, and though people are understandably scared of where that journey will lead them, it very often leads to where I am: perfectly fine.
Your homework. Get out, do things, enjoy life. Go cycling, swimming, or horseback riding. Whatever it is you do, do that. Enjoy it. It's not worth the hassle. You're letting it beat you. You beat it by living life. You beat this thing by forgetting it was there in the first place.
It's summer now. You have no excuse. Go win.
M