Breaking up with MS

On April 11th 2003 I woke up late for work. Nothing felt right. I was hot, sweating, panicked, disorientated and incredibly dizzy.

By this time of the morning I was meant to be at work, an hour’s drive away, fixing some cctv cameras. After a lot of apologising throughout the day and having a blazing row with my employer about it, I arrived home, deaf in my left ear, dizzy and with no sensation in the left side of my face.

This was the last day that I would go to work for about 6 or 7 months. My employer and my GP were non-sympathetic about what was happening to me. The GP saying that I should get some therapy as this was stress related. I saw another doctor. They referred me to the hospital for a brain scan and I had an appointment set for a few weeks time.

By the time my appointment came, I had moved back with my parents, who were going through a divorce at the time, and was unable to do very much at all. The left hand side of my face was now completely ice-cold numb and I had lost all motor function on the left hand side of my body. I had to be ambulanced to the hospital as I was unable to move myself without being sick. No one knew what was happening. I’d never been ill before in my life.

I can remember looking up at the tiny holes in the ceiling tiles while I was laying in the emergency room and as everything went dark I thought “Oh well, I’ve had fun”.  I thought I was a goner.

I woke up later in a hospital bed wanting to pee more that I ever had done before in my entire life. I thought I was going to burst. I tried to get up and walk to the toilet but quickly realised that A: my legs didn’t work and B: I was hooked up to a drip. I fell down like someone in a scene from a slapstick comedy.

The next ten days in hospital were blurry to say the least but this was probably for the best. I had blood tests, a lumbar puncture and another weird test where wires were attached to my head and I was forced to watch a black and white flashing checkerboard screen, quite like something out of a vintage horror b-movie.

Aside of learning how to walk again, I can remember laughing at myself as I was sitting up in bed re-learning how to write my name. The irony being that my name is only two letters long. It took some time but I got it in the end. Interestingly my handwriting is still terrible.

A few weeks later I was back in hospital for 5 more days of observation as the other side of my body had decided to stop working too and there was a concern that I wouldn’t be able to eat or drink as both sides of my throat were numb. It never got that bad but the doctors (and me) were worried about it.

In June 2003 I was diagnosed with having Multiple Sclerosis.

I’m not going to lie, life was hard to rebuild after that but I feel that I did to pretty good effect. I made a ton of amazing friends around the world who helped me through some really difficult times. I taught myself how to do web and refocussed my career to work in it; I figured hanging off of buildings, fixing CCTV cameras and burglar alarms probably wasn’t the best idea if my legs weren’t going to work for long.

The diagnosis didn’t stop me from doing anything I wanted per se but it definitely impacted certain aspects of my life – it was always there in the back of my mind with decisions that I have made.

Over the years I have taken a variety of preventative medications: 

• Rebif (my body rejected it)
• Copaxone (daily jabs do not agree)
• Avonex (SO MUCH NO. I lost a day and a half of my life per week)
• Gilenya (made me stupidly sleepy and tired).

In 2013, I took the decision to stop taking medication. The side effects of each drug seemed to be greater than the benefits of taking them.

Over the years I have had a few flare-ups but nothing that required me to go to the hospital. Each year I’d speak to the neurology team at my annual checkup and we would discuss the fun and adventurous things that I had done that year like racing my mountain bike. So much so, that in 2015 my consultant said that without the tall stack of medical notes in front of him he would say there was nothing wrong with me.

In the summer of 2017 I had a big relapse. It was the worst I had felt for a lot of years. My girlfriend at the time who was a nurse convinced me to go to see the neurologist and I had an MRI. I hadn’t had one since I was initially diagnosed.

The scan was followed up by a ten minute appointment which lasted an hour as the doctor explained things in granular detail.

He said that there was no difference between the scan I had in 2003 and the scan in 2017. There was no evidence of activity or further neurological damage. Had I been taking my medication still, they would have put the lack of activity down to them. However I had been off of them since 2013.

The doctor said that any potential “flare-up” that I thought I was having and thought I had suffered throughout the years, were in fact not  “flare-ups”. They were more than likely larger anxiety attacks caused by worrying about having an MS “flare-up” or “relapse” combined with general anxiety.

He explained that the symptoms of a large anxiety attack are very similar to the onset of an MS “flare-up” and these symptoms were concurrent with the symptoms I was seeing.

This came as quite a shock to say the least. A bloody good shock, but still a shock.

After 14 years, I was discharged from the neurology department.

I now have a letter which says that I wouldn’t be diagnosed with MS today due to the advances in medical testing. He also said that the chances of any relapse happening was minimal as I have been in remission for so many years and my scan shows no activity.

It’s time to make some fun changes to my life without the MS cloud hanging over my head!