So this week is MS awareness week!
2017 also marks the 25th Anniversary of the beginnings of MS specialist nursing in the UK. I’m such a huge supporter of our NHS and the amazing work that our doctors & nurses do which is so often undervalued and overlooked so I thought I’d take the time to explain how I actually got diagnosed with MS and the support I’ve been offered in the last 3 years.
Let me take you back to the beginning….
It was around my birthday August 2013. I was experiencing a sharp pain in my neck and thought I’d trapped a nerve. It didn’t seem to be easing up so I went to see my gorgeous friend Tash who specialises in Deep Tissue Treatment / Clinical and Sports Massage to see if she could sort me out!
After a couple of days when this hadn’t helped and I was losing some feeling in my right arm Tash suggested I go to an Osteopath. I took myself off to a local specialist and after a few sessions with no sign of improvement he suggested I go and see my doctor as he believed there could be an underlying issue.
I ended up going to the doctors once a week for 5 weeks with various issues. I was losing feeling in the right hand side of my body, I had a tingling/pins and needles sensation in my arms and legs and I started to develop an electric shock sensation through my neck and spine when I bent my head forward. I knew something wasn’t right but my symptoms were so strange and hard to communicate. I ended up being seen by a senior doctor and telling him that I knew there was something seriously wrong with me and if there wasn’t then there was something seriously wrong in my head.
I felt like I was going crazy.
He took this all on board and referred me for an MRI at the hospital.
I’d never had an MRI before and I was pretty calm about the whole thing but I WISH someone had told me how loud it is in there! They tell you to relax and keep still. It’s pretty hard to relax when you feel like you are laying in the middle of a building site let me tell you!
During this time I was experiencing more and more symptoms and my health was quickly deteriorating. At this point my balance was pretty bad, I was feeling temperature differently across my body (In the shower one half of my body felt the water was freezing and the other half felt like it was scolding) and my chest would feel so tight like it was being squeezed.
I also experienced stabbing pains in my head and the only way to ease the pain was to scratch my skin till it bled. It was so bad one night Ash took me to A&E.
While I was having tests I also had some crazy bouts of vertigo.
You know that feeling when you’ve had an awesome night out drinking and you finally get into bed. The room spins and nothing you can do will make it stop. You feel sick to your stomach and you just want to sleep. Well my experience of vertigo was exactly that…. non stop for a week.
That was probably the lowest point. Having to sleep on a blow up bed in your living room because your bathroom is on the ground floor and you can’t make it up and down the stairs unaided. Throwing up into a bucket because your body won’t move quick enough to get to the bathroom.
Because of this we decided to see a consultant privately in order to get a diagnosis and hopefully some course of treatment quickly. Turns out the same consultant I saw privately was also the same man I would continue to see on the NHS.
That was the point I was put on a high dose of steroids for 5 days. It massively helped with my vertigo and sickness but I was still walking about like an extra from Thunderbirds.
I remember being so frustrated that my limbs wouldn’t do what I wanted them to do. Like the messages in my brain were all jumbled up.
I had to wait 3 months from my first MRI to have a follow up MRI for comparison. It was based on these results that I received my diagnosis.
Initial symptoms August 2013
First MRI October 2013
Follow up MRI January 2014
Diagnosis February 2014
6 months from initial symptom to diagnosis. Considering MS symptoms present themselves differently for everyone and it is hard to get a definaive diagnosis I was very lucky.
I was assigned an MS specialist nurse at my local hospital and he is amazing.
He explains things to me in a way I can understand, he’s supportive and if I ever have any questions or concerns I can get a response pretty quick.
I know that isn’t everyone’s experience and I also know I’ve been so fortunate to not have a relapse in the last 3 years. I’ve made a lot of changes and had to swallow my pride on more than one occasion. I honestly believe that has helped along with the disease modifying drugs I’m taking.
Isn’t science awesome!
I’m so grateful for the access to MS specialist nurses and I’m not really sure what I’d have done if it wasn’t for the help, advice and support I’ve received from them.
Together we are stronger than MS!