Patient Stories


Faces of PN: Living with Multifocal Motor Neuropathy

Edward from the UK shares his PN journey with us:

The train is here, and I’m already late for my first internship. Better sprint the short 50 m distance between my front door and the train station – as I am quickly becoming a master at. It’s been raining, in typical British fashion. August monsoon season, and the steps up to the platform are soaking. I’m panting heavily, the conductor’s whistle has been blown, doors beeping, doors closing, almost th–I slip on the last step. Instinctively, I stick out my hands in defence, bounce off the ends of my fingers (imagine seeing your fingers bent 90 degrees, the wrong way) and ricochet into the train carriage, clutching my hand in agony.

My name is Edward. I’m 19 years old, and welcome to my PN journey.

“I think you’ve snapped your extensor tendon,” the GP said calmly on the other side of the room. How would she know better? Three months, an X-ray and countless Ibuprofen after falling; she is witnessing a patient presenting a bizarre physiological change with a limp and lifeless middle finger in his right hand. Stranger, is the drooping migrating over several months to the ring finger, almost like I was being forced to count down from five.

By this time, with the fall providing a sound conformational bias that I had snapped a tendon in my right hand, I bandaged it up and kept trudging on with my master’s degree with the knowledge of a referral in sight with a leading hand surgeon in Birmingham. An experienced and self-assured man, he was quick to double down on the idea of an MRI of the hand plus a follow up surgery being able to do the job. Done deal.

Six months in.

“Try to count to 10 for me,” murmured the aneasthestist. I barely made it to three and was out cold.

Lights on.

He’s taking off the latex gloves with his head held low, the upbeat and ever-positive vibe snatched from him within the two hours I was under. ‘No, nothing. I couldn’t find anything. We will have to do some more digging’ – Or something along those lines as the disorientation hit hard. Then came the anger. My life until that point had been a series of inputs and outputs, things just made sense and fitted together. The uncertainty is stripped away when you’re in your youth. This was a harsh introduction to real life.

Eight months in.

Electrical stimulation, a sure-fire way to keep the hand active when nerve damage present. At least that’s what the marketing and research articles suggest. And they’re right, under normal acute nerve damage conditions. The definition of baseline changes significantly when there’s a more sinister cause at play. I should probably explain how the deduction of nerve damage arrived so fast. Well, there wasn’t any other explanation. It’s really as simple as that. An MRI on my forearm confirmed no further distal mechanical issues, so we rolled with this.

One year in.

Sitting on the train to work, in my student flat, whilst getting ready for bed – wherever it was, using the nerve stimulation device started to feel more like a game at this point. Middle, ring and forefingers drooped down to my palm, it literally felt like there was a brick wall halfway down my forearm stopping the messages getting to the digits. Thumb and pinky? Top nick. Both myself, my family and the surgeon new things weren’t right though. Cold weather literally paralysed my right hand, I could barely open my wallet with it, my tricep was weaker and my hand looked physically smaller and more boney.

Another appointment.
This time, progress. Two years since my fall, I’m referred to a neurologist for an NCS and EMG. The end of my two-year struggle for the truth and fictitiously created brave face was… about to begin. Results are in, and a differential diagnosis lists several sinister outcomes, the only one I can concentrate on is motor neurone disease.

Horror, fear, misery, anxiety and nausea. Every day, mind like a tornado, confidence at an all-time low and replaced with fatigue.

The referral to a specialist neurologist in London was a blessing. The familiar cheeriness of the surgeon backed up with quick action and a huge repertoire of current and former clients. It had never felt so good to be told that I had a progressively ongoing condition that affected multiple limbs, but wasn’t fatal. It had never felt so good to be diagnosed with MMN.

What is MMN ?
Multifocal motor neuropathy is a progressive autoimmune disease that affects your peripheral nerves. Basically, antibodies in your body express themselves as culprits for attack by white blood cells and immune responses – specifically along the myelin sheath of your nerves, the fatty lining that allows for good conductivity to your muscles. Intuitively, weaken the lining, and weaken the signal. The main treatment, which I am on, is an intravenous injection of immunoglobulins (IVIG) that block the response of your innate immune system and – in theory – give your nerves the ability to recover.

For me, I’ve not noticed huge improvement since starting three years ago. My right hand has certainly plateaued, and my left has gotten progressively worse since (coincidentally) having another incident a year after diagnosis involving two 30 kilo dumbbells and an accidental drop… wasn’t nice. Much in the same way as with my right hand, whilst the neurologists seem to disagree, I am quite confident that the bio markers released from falls and trauma can exacerbate an immune reaction and start symptom commencement earlier than under normal conditions, but that’s my gut talking. The main takeaway is that I’m able to do much of what I did before having symptoms, including exercise, gym work, playing the drums, working, and all other daily tasks that we tend to take for granted. I’m completely aware that many people do not have this privilege, and it’s because of this that I’ll always be grateful.

Coming up to five years with MMN, I would be lying if I said life was easy. If it weren’t for the extreme emotional support of my family and closest friends, I would surely be in a terrible place right now. Disregarding the physical limitations, the mental strain pretending to the world that I can operate in a normal way takes a cumulative toll. I’ve done nothing but try to push myself harder since, to hide the physical drawbacks and send a strong f*ck off message to the bad luck. But I’ve realised that spilling my journey, as difficult as this is for me, out to the world for you all to see is a much bigger win. If even one of you can relate to this, or take some positivity, joy or curiosity from these mere words in any way, then we are winning.

My weakness is masked by reasonably strong upper body strength and years of adaptation coupled with a consistently healthy diet. Don’t get me wrong, I enjoy unhealthy food, especially the sweet stuff. I just try to keep inflammatory fatty and unnecessarily processed stuff to an absolute minimum. Aside from stopping hormones and metabolic processes going nuts, it helps me stay healthy when viruses (*cough* *cough*) break out, times during which the cold weather and acute infections have historically combined to worsen my symptoms year on year. I persist in going to the gym regularly, getting in 300 press ups a day, doing long runs and making my future plans still viable outcomes. It is not without the tireless, support of those closest to me, as well as those others affected by neurological disease who I come across in all walks of life, from the workplace to the hospital for my regular IVIG treatment that I am the person I am today.

Somehow, since this all happened: I have been able to graduate with a degree in chemical engineering, get a job at a leading investment bank and start my own business – Health Haven – with physical and mental wellbeing at the forefront of my vision here. Connecting anyone, anytime, anywhere with a wellness coach, masseuse, personal trainer, sports coach… whoever it may be, as easy as finding an Uber. It is these incremental wins that keep me going, and keep my chin high when the tremors, shakes and weakness get broadcast to all those around me without my control.

Keep fighting. My name is Edward, I’m 24 years old, and this is my PN journey.

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