My sister Holly was diagnosed with MS in the late 90s. It has not been an easy ride for her over the years, and I am thrilled that she is appearing here on LLG again to talk about MS in MS Awareness Week, in association with the MS Trust.
This year the MS Trust is 21. Since they were founded 1993, we’ve seen a lot of big changes in MS support and care: the first MS specialist nurses, the first disease modifying therapies and more and more positive, practical, reliable MS information.
MS affects everyone differently, and everyone has a different MS story. To mark their birthday they’ve asked some of their friends and supporters for their perspectives on the big achievements of the past 21 years and the big challenges of the years ahead.
My sister Holly is one of those 21 who have contributed an essay, and I am very proud to run an extract from it here. Holly battles with the strain of living with MS today and I think it is hard for even her family and friends to really comprehend what it is like to live with the disease. Her piece explains the journey she has been on over the past sixteen years, and it is heart breaking.
(If you aren’t sure what MS is, and how it can affect people, please read my MS primer here.)
Over to you Holly:
This year marks not only the 21st anniversary of the MS Trust, but the 16th anniversary of my own MS diagnosis. I feel fortunate that throughout my journey the MS Trust has been there to offer support, not just by being a trusted source of reliable, accurate information but by providing a welcome human touch with its helpline.
When I was diagnosed in 1998 my overwhelming feeling was one of relief; at last I had a reason for the overwhelming fatigue and weird constellation of symptoms that had dogged me since school. I wasn’t just a lazy hypochondriac!
The challenge I then faced was finding out more about this MonSter that was blighting my daily existence and casting a shadow over my future. Then my knowledge of MS was limited to knowing it was the reason my drama teacher left and returned to visit in a wheelchair, and it was what had cut short the life of Jaqueline Du Pre. The internet was still in its infancy; although the MS Trust launched its own website in 1997, I didn’t own a computer.
So instead I turned to its leaflets, relieved to find a comprehensive source of clear, accurate, non-alarmist information. Since then the internet has exploded and there is so much ‘information’ on MS that it has become a minefield, so the role of the Trust has been a key resource – a trusted, concise source of reliable information that cuts through the chatter of ‘miracle’ cures, personal claims and dodgy information that now litters the web.
My own initial diagnosis had been the most common form ‘Relapsing Remitting MS’ – but it wasn’t clear where the remitting part was! New symptoms constantly appeared, adding to the existing ones that refused to go away. Back then treatments options were very limited (there was no widespread access to the two available types of Disease Modifying Drugs).
Two years on from diagnosis I moved to Miami with my job, having convinced the company’s occupational health doctor that my MS barely affected me. One of the better aspects of MS is that the majority of MS symptoms are invisible, so you cannot tell how someone is affected simply by looking at them.
Ironically, at this particular medical I was suffering from a bout of optic neuritis and had lost the central field of vision in my right eye. As the doctor did not examine me he was none the wiser. So off I went with an apparently clean bill of health. Inevitably, as this wasn’t exactly a true assessment, I then spent more of my time in Miami in hospital than in the office.
As an inpatient I was frequently visited by medics curious to see this patient from the UK who was an example of what happened when MS went untreated. It was there that I met a fantastic professor of Neurology who gave me a first glimmer of hope. He was developing trials for a new type of drug (a monoclonal antibody called Antegren – now called Tysabri) and his excitement was palpable.
He urged me to participate, but unable to commit to staying in America for the duration of the trial, I reluctantly returned to England clutching the name of an English neurologist he said I should contact with a view to participating in the UK arm of the trial. Then followed my darkest years.
I was accepted onto the trial here, but it was a blind trial and I was unlucky enough to receive the placebo (saline solution). It felt like my health went into freefall and I felt abandoned and unsupported. My mind seemed to disintegrate as fast as my body. In desperation I left the trial and returned to my local hospital under the care of my old, trusted neurology team from my pre-America days.
At last I was started on active treatment (Copaxone, which was now widely available under the Risk Sharing Scheme) and my health stablised. Too much damage has already been done though and after several years of long term sick leave I reluctantly accepted Ill Health Retirement from my employers.
Then an especially vicious attack found me in hospital in 2010, unable to even sit up. As frightening as it was, it had an unexpected positive outcome. My diagnosis was changed to Rapidly Evolving Severe RRMS and thus I became eligible for treatment with Tysabri – now available on the NHS following approval by NICE for use in severe cases. So a decade after my American neurologist had talked excitedly about this revolutionary treatment, I finally received it.
To read the rest of Holly’s piece, and the other twenty contributions, please click through to the MS Trust here