From diagnosis to determination
For the Centre’s Communications Manager, Andrew Scott, symptoms of his MS were sudden and dramatic and in the space of one weekend, he went from pain in his neck, to a complete loss of sensation. Here Andrew tells about how his life changed in unexpected ways and how he is confident that he will receive the best support and treatment possible from the Chilterns Neuro Centre, both now and in the future.
“In the month prior to my first major episode, I’d noticed some weird symptoms like tingling in my feet but I just shrugged them off as nothing major. One day I had a pain in my neck that progressively got worse throughout the day and by the end of the day it was excruciating to the extent that my wife thought I was having stroke so took me to A&E.”
“Eventually I was sent home with some painkillers but over the course of the weekend, I started to lose all sensation in my body, starting in my feet and gradually working its way up to my chest. Several more trips to A&E later, an MRI scan and lumbar puncture led to a diagnosis of MS.
I was 35 years old.”
“After a few weeks, sensation slowly started to return but it did feel like I was having to learn to walk and use my hands again.”
Like many others, after his initial diagnosis, Andrew was keen to learn more about his condition and available treatments, so he began following a variety of people with, or relating to MS, online. It was on social media that Andrew first became aware of the Centre.
“I learnt about the Centre early on in my diagnosis but never felt quite ready to go.”
“There was perhaps an element of fear as to what I may see when I came to the Centre – could I be looking at a potentially bleak future?”
“A few years later, I saw an advert for a job at the Centre, working for a charity I 100% believe in and I felt it was the right time for a move. I also think I felt more comfortable coming to the Centre as an employee rather than a beneficiary.”
“My initial fears were completely unfounded as everyone at the Centre has been so welcoming and provided a really supportive community.”
Andrew feels incredibly fortunate that his MS has not progressed very much and, while difficult, his symptoms are manageable at the moment.
“Pain and discomfort are probably the worst things about my MS. My legs still feel relatively numb most of the time and my hands and arms have a fairly constant sensation of pins and needles.
These symptoms are exacerbated by the heat which, for someone from the north of Scotland, is anything above freezing.”
“I can be quite clumsy and my arms usually have a nice collection of oven burns on them and, although my balance is generally fine, if I get too hot (e.g. when I’m out running) then I can sometimes be unsteady on my feet.”
Andrew has received some treatments while working at the Centre – including occupational therapy and oxygen therapy, but the encouragement of everyone here has also motivated him to regain his fitness and take on a new challenge.
“Oxygen therapy has been great as I have been able to work while in the chamber so even though I am receiving treatment, it hasn’t disrupted my working day.”
“Prior to diagnosis I was relatively fit – running half and full marathons and regularly going to the gym.
Since my children were born, I have had little time to actually focus on exercise but the importance of exercising cannot be overstated and the Centre has been really encouraging in getting me back out there.
I have recently got back into running again with a major goal in mind – in 2025, I will be taking part in the London Marathon to raise money for the Centre.”
MS has given Andrew a deeper appreciation of life and a greater determination to enjoy the here and now.
“For me, the Centre provides reassurance that, should my condition deteriorate, there will be services, and a team of very skilled and experienced people, to help support me.”
As you would expect from its Comms Manager, Andrew is a huge advocate of the Centre.
“Absolutely come along and see what the Centre has to offer. Although I was aware of the Centre early in my diagnosis, I didn’t know the full extent of treatments and therapies available.”
“Even if you don’t need those services now, it will give you confidence for the future that those services will be available should you need them.”
We wish Andrew all the best in his dedicated training regime for the London Marathon 2025, and rest assured, he will have a crowd of enthusiastic supporters from the Centre to cheer him across the line on the day!
If you have MS, or Parkinson’s or experienced a stroke, and feel you would benefit from the services offered by the Centre, or you know someone who would, then please get in touch by phoning 01296 696133 or by emailing info@chilternsneurocentre.org