Karine Mather was diagnosed with MS when she was 27, although she noticed the first symptoms much earlier.
It started off as a mental-health issue with anxiety and depression, she remembers. Later, she noticed she was starting to limp when she walked longer distances.
Karine began using a walker to help with her balance and stamina, and then a scooter when she could no longer walk very far.
“I got to the stage where the wheelchair became quite liberating, and gave me back a sense of freedom again. Now I rely on the power-chair full-time because I can’t stand by myself any more.”
Now 34, Karine retains the use of just one hand, and suffers pain, stiffness and spasticity in her body that has got worse as the disease has progressed.
“It feels like a fist clenching all the time. And I have days when my mind is cloudy and I miss out words and sentences.”
Both remain upbeat but the financial, as well as the emotional, impact of MS has been huge.
Karine’s MS is the type known as “primary progressive”, or PPMS, which meant that for the first years after diagnosis, no disease-modifying treatment was available.
One new drug – Ocrevus, or ocrelizumab – was recently licensed for early PPMS in the UK but came too late to help Karine.
Now the MS Society is launching an ambitious “Stop MS” appeal, aiming to raise £100m to fund research over the next decade into treatments that can stop the progression of disability in MS.
Since being diagnosed with MS in 2015, after many years of symptoms, I’ve been looking for anything that might help slow or even stop the progression of my MS, which affects the nerves in my brain and spinal cord.
I last wrote about my MS after travelling to Mexico for an autologous stem cell transplant (aHSCT) in 2017.
Sadly, despite initial improvements, I’m now back to where I was before: slowly but surely getting worse.
The only improvements that have endured are the lifting of some of the crushing brain fog I had before HSCT and less hesitation in my speech.
For both, I am eternally grateful, as they mean I can continue to work at the BBC, in the job I love.
However, I have no idea how long this reprieve will last.
The fatigue that had long been my worst symptom is now back with a vengeance, so that staying awake throughout a busy working day remains a challenge.
That MS fatigue did lift for a few months, and it felt miraculous. I awoke every day refreshed. But then it returned, and I awake after eight full hours fast asleep feeling as if I haven’t been to bed at all.