MYsterious MS

Louise's Story

Louise looks on as too much noise and stimulation makes her dizzy

Louise looks on as too much noise and stimulation makes her dizzy

“To me M.S means the old me no longer exists and the “new me” isn’t someone I want to be. I miss the physical and mental stamina I used to have, I wish I wasn’t in pain and needing to fit each day around my illness.

My photo represents my daily struggle with Sensory Overload. Too much noise and visual stimulation makes me dizzy and fatigued and feels like my brain is deflating. My skin is also very sensitive and can feel like I’m burning.

Through all of this though, I try and keep positive and active and remain hopeful of a cure.

I'm going to India in August 2023 to get HSCT - stem cell treatment.  I'm looking forward to a new M.S free immune system.”

Nick's Story

Nick is walking through the fog. He is wearing warm clothes and has a beard, glasses and a hat.

Nick is walking through the fog. He is wearing warm clothes and has a beard, glasses and a hat.

One of the hidden symptoms of MS is cognitive impairment commonly referred to as “brain fog” which tends to worsen as the disease progresses.  The MS lesions in the brain effectively create a brain injury.  This leads to difficulty in understanding or completing quite simple everyday tasks, and poor decision-making.

When faced with choices which have been easily dealt with in the past, reasoning and decision making become confused and ill-considered.  This can detrimentally affect personal relationships as our power to comprehend the words and actions of those closest to us is distorted and our behaviour appears to becomes unpredictable and even destructive.  Frustration and irritability tend to result from the reduced ability to function as before. 

I was a commercial property consultant for over 30 years involved with negotiating and managing large scale development projects. Three years after diagnosis at the age of 56 I found I could no longer perform my work at a satisfactory level.  I have been medically retired since then.   

From the time of diagnosis, I mentally prepared myself for the physical deterioration that would probably impact my life, but I had no idea that my brain function would also decline.  I count myself lucky that the disease affected me later in life. I had lots of good years, whereas many people with MS reach the point of being forced to stop work much earlier. 

Shona's Story

Shona's MS means her legs often feel as though they are on fire

Shona's MS means her legs often feel as though they are on fire

What MS Means to Me 

When you meet me, you may not realise I have MS.  I look well. Most of my symptoms are hidden but like many people with MS, I experience a lot of pain. You cannot see pain. Every day it feels like my feet are on fire. I am a very positive person and like to appear happy all the time, but sometimes I find it hard to pretend that all is well.