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Can’t change what happens, just have to deal with it - Wayne's Story

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“I try to take everything in my stride.  Can’t change what happens, just have to deal with it”

When Wayne first started experiencing tingling and weakness in his hand and wrist, he ignored it "like a typical bloke". But then six months later, in May this year, he was diagnosed with relapsing remitting MS. Here he tells us about coming to terms with the diagnosis, starting treatment, and why he's determined to "keep smiling". 

I’m 39, 6 foot 2, 18 stone, broad of shoulder, with a very soft and giving nature. I was a NDT technician for most of my life. This included crawling around oil rigs, drill ships, power stations, and a lot of heavy work. I’ve worked in retail since October last year, due to the downturn in the oil and gas industry. In my spare time I like to restore cars, fix cars, and install car stereos.

In December 2016, I started to get tingling in my left thumb and finger. I thought it was due to lack of oxygen, as I had a very bad cold over Christmas. It gradually worsened, and my hand and wrist became very weak. In February, while working a delivery, I felt something go in my neck on the left side. I thought I’d pulled a muscle or trapped a nerve. I carried on working as normal for a couple of months, thinking it will get better on its own (typical bloke). Come April, my symptoms included severe weakness on my left side (I’ve always been a very strong individual), a slight shimmering in my right eye, memory issues, balance issues, and a slight slurring of speech.

I went to my GP, who referred me to the IMATS team. I met with a physiotherapist, who sent me for a MRI of the head and neck. This was when MS was first mentioned. I knew a little about MS, as my neighbour had it. Before meeting with the consultant, I knew deep down that MS was the right diagnosis. The MRI showed lesions on my brain and spinal column, and I was then referred to neurology at the Royal Victoria Infirmary in Newcastle upon Tyne.  I met with the consultant, who confirmed I had RRMS (relapsing remitting MS). This was mid May, and several  DMD’s options were discussed.

He recommended Lemtrada, as I was very early on in the disease, and he thought I would respond well to it. I was a little apprehensive as I wasn’t keen on the possible long term effects it may have. After going away with the information, and further discussions with the MS nurses, I agreed to have the first course of Lemtrada. It’s around this time that my GP recommended I go on the sick to give me a little time to deal with it. I was apprehensive, and turned down the offer of a sick note several times, but he insisted. I informed work pretty much straight away, and everybody was really supportive, especially my manager who has a friend with MS, so he understood a little of the disease. I decided to inform work, as my symptoms were becoming very apparent, and slightly embarrassing to myself. There’s only so many times you can pretend you didn’t stumble, or slur a word.

It was arranged for me to be admitted to the RVI on the 3rd of July, for my first course. I chose to stay in hospital for the duration of the treatment, getting my first taste of hospital food.  As everything had moved so fast, it was only while I was in hospital that it hit home, and sunk in what I had. From what I understand, its unusual to get the Lemtrada treatment so early on, and without any other treatments being tried.

It’s now three weeks since the infusion ended, and I think I’ve come away pretty unscathed. During the infusion, I had headaches, and extreme fatigue, but I kept myself busy with books and movies. The only real side effect I’ve had so far is swelling and bruising of the feet and ankles. A ultrasound was performed, and more bloods taken, but nothing showed up. I can’t thank the staff at the RVI enough for everything they have done for me.

I used to be a bit of a stress head, and had I got this diagnosis a few years back, it would have hit me quite hard. These days though, I try to take everything in my stride. Can’t change what happens, just have to deal with it.

The hardest part for me to come to terms with, is knowing the symptoms I’ve got, I’ve got for the rest of my life. I can deal with most of it, but the lack of strength and numbness in my left arm, loss of working memory, and balance issues are very hard for me to come to terms with. As I write this, I hate to admit to myself the possibility of these things never improving.

Because a lot has happened in such a short time, I’m only really now understanding MS, Lemtrada, and the impact it will have on the rest of my life. I was hoping the infusion treatment would be like a miracle drug that would rid me of my symptoms, foolish I know. The hardest part, above all else, is not being able to do the things I was doing just a year ago. Enjoying car shows, taking engines out of cars. I struggle to carry a cup of tea, or hold a paint brush now.

It’s still very early days for me, still not sure how Lemtrada will work for me, I’ve developed a couple new symptoms since the infusion, but at this moment in time it’s unclear if it’s a side effect, or a new symptom.

I’m hoping to return to work in a couple of weeks, to restore a little bit of normality, I just hope I can slot back in to the team, and do my part, as my colleagues have been great. In the meantime, it’s about getting my pain medication right, and building my strength and stamina back up.

I really hope I see improvements, and MS doesn’t become a ruler of my life, I know it’s not the diagnosis it was say 20 years ago with the improvement of the drugs, and understanding of the disease.

I’m learning a lot from reading about how other people have dealt with it, which diet to follow, and things to do to help myself. Gotta stay positive, and keep smiling. 

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