A conversation with my mum helped me handle my diagnosis

I was 23 when I had a sudden severe MS attack, where my right arm became paralysed. I was initially treated for a stroke but within days the entire right side of my body became paralysed. I had complete speech loss and major cognitive decline.

Getting a diagnosis

I was told I had a rare form of MS called Balo’s concentric sclerosis. During the three months I spent in hospital, I had to relearn how to walk, talk and move again.

It’s been an entire year since then. I'm now 24-years-old and I've come a long way with my recovery. I can walk with aids such as my splint. I can speak, although my speech is still impaired. I also have some movement in my arm.

That being said, the severity of the MS attack has left me with permanent brain damage. And with long- term symptoms such as fatigue, memory issues, speech and mobility problems, partial paralysis and more. But I'm learning how to navigate through my symptoms, how to work with my disability and how to live with my MS.

My diagnosis didn’t just affect me

I asked my mum what she could remember about my diagnosis. She told me:

“I didn’t know what MS was. I didn’t even know what MS stood for. Initially, I actually thought it was Motor Neurone Disease (MND). When you were diagnosed, I wanted to understand what it meant. What it meant as a prognosis, what living with MS would mean for you, especially at that stage.

"At that point, you had paralysis down the entire right side of your body and had lost the ability to speak. We were desperate to know whether that would come back and how much, if any, would come back. But nobody had answers, and at the time, it didn’t look likely that anything would.

"You would forget… I had to break it to you, confirming several times a day that you had MS. That was our reality for the first fortnight after your diagnosis."

During this difficult time, my mum’s words carried me through

One of the most memorable MS conversations was with my mum, during this time. I couldn't speak, half of my body was still paralysed. I was basically at my lowest both mentally and physically.

I remember what my mum said: “you might be here in hospital for a long time. You can spend your days feeling angry, upset, frustrated. It doesn't matter because the days are going to pass either way. Or you can spend them trying to see the good. It doesn't matter because the days are going to pass either way.”

And that conversation and mindset helped me through hospital and has continued to help me through my recovery.

It changed the way I view the condition. It helped me handle my diagnosis. That conversation and mindset helped me learn how to live with MS.

Not talking doesn’t make MS any less real

It can be hard to talk about MS. Sometimes I have avoided talking about it because I didn’t want to upset the people around me. Because they can’t change what’s happened to me. They can’t make my body move like it used to and bring my old life back. They can’t take away this condition.

I found it easier to say "I’m fine" than explain. When you're dealing with things like fatigue, memory issues, or mobility struggles. It can feel like too much to put on people.

But the reality is, not talking about it doesn’t make it any less real. It just makes it lonelier. I realised that the people who care about me want to understand, even if they can’t fix it or take away my struggle. Talking about it gave them a way to be there for me.

What I’ve learnt about MS conversations

You’re not a burden. Talking about your MS doesn’t make you weak, dramatic, or attention-seeking. It makes you human. And it gives people the chance to actually see you, not just a version that powers through everything. We’re allowed to be honest, to be vulnerable.

The right people will listen - take your time. They might not be able to take away your struggle, but they’ll have a better understanding of how to help.

Sol's most memorable #MSConversation

However you’re affected by MS, remember our MS Helpline is here for you. Call them on freephone 0808 800 8000 or email [email protected]. They’re open Monday to Friday, 9am to 7pm, except bank holidays.

Balo’s concentric sclerosis and MS

If someone’s told they have Balo’s concentric sclerosis (BCS), it might be diagnosed as a rare kind of MS – as it has been for Sol.

Sometimes the diagnosis is for BCS as separate condition.

Lots of symptoms can be the same for BCS and MS. With BCS, symptoms often come on like a stroke. To treat it, doctors sometimes prescribe MS treatments as well as steroids.

Balo’s concentric sclerosis on MRI

BCS and MS both damage the myelin around nerve fibres in the brain or spinal cord.

Balo’s concentric sclerosis shows up on an MRI scan as lesions in the shape of a circular target – concentric rings. Typical multiple sclerosis lesions look more like blotches or spots on the MRI.

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