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My adviceFind friends that understand in our support group
Hi there, I am the founder of MS Troopers UK.
I started looking for support groups online shortly after my second MRI and I found a couple that I liked but I was still looking for something a bit more. I wanted to be a part of a group that I related to. Where I could be honest and true and at the same time have a laugh and be supportive. As I am sure many of you will relate that in our lives it is difficult to explain what is happening to you when you don’t know yourself. So, MS Troopers UK was brought about in December 2017, and I didn’t know if it would work or not, but I think it is doing ok.
When I went looking for online support I was terrified. I was like a rabbit caught in headlights not knowing which way to turn. I was in the process of diagnosis even though in 2013 I was diagnosed with benign MS, however as the years went on many further symptoms showed up.
In 2013, I remember my major relapse coming on – I had got up in the morning at my friend’s house which I was looking after – 6 dogs, chickens, cats, rabbits, ducks, turkeys and a goose called Tallulah. It was a Saturday afternoon and I felt pins and needles on the tips of my fingers. I felt this tightness around my middle – like my kidney wanted to burst out my side. My folks lived next door, so I went over to see them and then my stomach got itchy, so I scratched it and that was lethal – it was so painful and burning to the touch. My left leg became the same – couldn’t be touched.
Couple of days later I drove into town – at the beginning of the main street my eyesight had no issues and by the middle of the main street I couldn’t focus out my left eye. Nervously I got through the traffic lights and went home. This went on for about 3 months. Couldn’t deal with light, couldn’t watch or focus on the TV – Just lying on the couch, totally fatigued and waiting/wishing/hoping for it to be over.
One evening I started to eat some pancake rolls and I choked, I couldn’t stop it. I thought something I had eaten had got stuck so I called NHS 24 choking down the phone and an ambulance came and got me. I couldn’t walk straight and was trying to throw up. To anyone it would have looked like I had been out on the lash, but this was early evening. I was mortified. The choking after just over an hour calmed down and they did an ECG as my heart had been racing, and this was a regular occurrence. I was told I had had a panic attack by the casualty doctor and went home. Never eaten pancake rolls again though!
So, I went to the GP who advised he thought it could be MS – clearly, I was adamant it wasn’t – must be a kidney infection – so he humoured me by giving me some sort of antihistamine to sort out the vertigo.
I went for MRIs on my brain, neck and spine. Two lesions were found on my spinal cord and a small number of lesions on my brain. This is when I was told it was benign MS and that effectively I had an attack of the nervous system. I could go back to living a normal live.
So, as you can imagine I was elated with this news and soon after I got an excellent job – it was a career changer and I loved it – however within a year I had obvious balance issues. When telling the GP, they told me I had Labyrinthitis – 3 times I was told this over 3 years. Third time was March 2017 – and one GP had the bright idea to read my records and see the history and the benign MS. During this time, I had been made redundant 3 times in the space of 7 months – third redundancy probably came at the right time.
My sister and I decided to take a holiday in Harrogate for a week just to take some time out and re-evaluate – and this is when I decided to start my own business offering broker services in Utilities. It was exciting, and I was happy about it. I am still enjoying it and meeting fantastic people in the process.
So, it was back to the neurologist and by this time I had effectively a drop leg. He did the usual balance test and I could see in his eyes what was coming. “I am pretty confident this is MS” Back to the MRI which confirmed it, yet thankfully no active disease which meant I was in remission.
20th February last year I was officially diagnosed with Relapsing Remitting Multiple Sclerosis. I looked at my scans and was pleased to see the lesions weren’t as much as I thought they would be. In fact, some of them had completely gone but others had turned up. I didn’t realise that lesions could disappear so that was a positive for me. I was advised I hadn’t had a further major relapse – instead it had been numerous minor relapses.
From the MRI in August 2017 until February 2018 I have been through many interesting symptoms. My left leg isn’t working, Huge amount of muscular pain all over. Memory and speech issues. However, balance issues are minimal and no further optical neuritis – so all is not lost.
I had another MRI in April 2018 and results of bloods in order to start the drug Tecfidera in May2018. It has worked well for me with no further active disease. However from my last consultation in March this year I have been advised this may be suspended due to my low white blood cell count, however I have alternative DMD options.
What I have learnt from this so far is that you can’t be in control of everything and there is so much more to life than narrowmindedness and grudges. We must be kind to each other as we really do not know what is going on behind the closed doors or what we are about to face and be challenged with.
What helps me are my 2 gorgeous border collies – they get me up and out every day – I may not walk far but I take them in the car to a place they can run about, like the beach - they have adapted fantastically well to what’s happening. They get me through the darker times and I am so very thankful to have them with me. Absolute companions.
And that is why we have MS Troopers – to support each other – to listen to each other and to build forever friendships. Life is too damned short!!!
So, as I have mentioned to friends recently, if I can help just one person then that makes me happy. Our group is here for people with MS and we have our sister group - MS Troopers UK for friends, family and supporters, and when people are ready to speak out or comment on a post we are all here to listen.
We can all feel the loneliness and isolation and we all want to maintain our independence. MS Troopers UK is bringing people together and building forever friendships.