Megan's Story | MMN

A huge thank you to Megan for sharing her experience of Multifocal Motor Neuropathy, from early MMN symptoms through diagnosis and life after. The time to diagnosis discussion has come up a little recently on our social channels. If you're happy to share in the comments - what was your timeline like?

"I'll be the first to say it, my MMN story isn’t exciting. For a long time I didn't think it was worth sharing it because who is interested in average, but then I realised maybe that's what some people need to hear, that life with MMN can just be a regular old life.

First hints

When it started, I was working as a Chef de Partie. At that point I was mostly on fish but as with many small to medium kitchens you need to be adaptable. The first hint something was wrong was when I started making basic mistakes in my knife work.

There's a cut called julienne. Basically long, fine, neat strips. In a professional kitchen they need to be even or they don't go out, this is something I learned early at college and it was drilled into my head.

Suddenly I was re-cutting, wasting product, and quietly feeding the veg stock bin with my mistakes. Then flipping fish or positioning in on the plate started feeling awkward. You can hide a dodgy carrot or two, or the odd bunch of mangled chives, but when you impacting the fillet inventory people start to notice.

"Chef's elbow," my head chef said. Or Tennis Elbow as it's known. It made sense, kitchens are repetitive strain hot spots. Day after day, hour after hour of cutting, lifting, stirring, twisting, plating, all while hunched over. Of course it hits your joints and muscles.

So I strapped up my wrist and arm, took anti-inflammatories, and tried to let me left hand take the load (which is way harder than it sounds!), but one thing kept nagging me. There was no pain. I've had RSI before and it really hurt! This time, my arm just felt drained of energy, and it wasn't improving at all.

Then my right foot started acting up. Again, not dramatic, just tired. I'd catch it on the stairs sometimes, or find myself scuffing the floor now and again. But it happened enough times that I could put two and two together.

Time rolled on and there was no improvement. My back was starting to hurt from shifting my weight to accommodate the weakness. Small mistakes continued to slip out and even my very patient head chef (a rare species) was running low on patience.

The moment I phoned the GP was when I was getting ready one morning in the small kitchen changing space. I had to ask someone to fasten my top three buttons as the angle of twisting my hand left me with absolutely no power in my fingers.

Diagnosis

Getting a diagnosis wasn't quick. In the grand scheme of things I was lucky, I've read other stories online that makes my two years seem like a flash, but it felt like it went on forever. I made the mistake of Googling my symptoms and just... don't do it. Google has a way of making you think you've got months left at a push.

During diagnosis, my age was blamed: 40s. My hobbies were blamed: jogging? My job was blamed: fair enough on that one.

I was shipped off to the practice physio, worked through my exercise sheets and resistance band work, had a scan at the hospital to check out the joints, back to the doctor, back to the physio, back to the hospital but this time I was in front of a neurologist.

He looked at my notes, asked a couple of questions to which he nodded, and said, "I think it might be something called MMN, here's how we're going to test it.." and suddenly we were off!

He pulled, twisted, and tapped at my arms and legs, a nerve exam was done, bloods taken, the full works. He never said it was definitely MMN, but talked me through the condition and what it might mean, it was quite reassuring.

When diagnosis came back as MMN, I felt so happy. It sounds strange to be happy but having a name for what I felt, and knowing it wasn't going to kill, lifted a massive weight.

Later when I was home I did have a little freak out about it being with me for life, but at that point I was just happy to have a life.

Treatment

After that it was life admin time. Telling family, talking to work, and waiting for my first IVIg which didn't take long at all.

IVIg was the definition of a gamechanger. I know for some people, it only makes a dent so I don’t want to go overboard on this, but it truly got my life back on track.

I felt like **** the day of my first infusion, like I’d been out on the tiles the night before, and the next day I had the ‘hangover.' It lifted by tea time and at first I felt pretty good but sad that I didn’t feel much different physically. Then I realised that I was telling my friend all this on messenger without making a ton of mistakes, my thumbs were back! I went to the kitchen, grabbed an onion and gave it a fine dice, my knife skills were back!

I don’t know what I thought I’d feel but it just quietly gave me my body back and I’m forever thankful.

I still get a bit ill after my infusions, but either my body adjusted or I just got used to it because it’s manageable now and I can plan for a quiet evening in advance. It’s worth missing a night out or adjusting my work schedule for a few weeks of function.

Work

I was lucky, my boss was brilliant. We reshaped my role so I could lean more into sauces, soups, and broths, places where precision matters but perfectionist knife work isn't make or break. It kept me in my career while still being realistic about my capabilities.

I know not everyone gets that kind of flexibility, and I'm very away how much luck ran through this story. Luck (comparatively) that I got diagnosed, luck that I responded well to IVIg, and luck with work.

These days I'm in a Japanese kitchen, spending most evenings prepping ramen dishes or curries, just don't ask me to roll sushi!"