MS: Busting the Myths
I first noticed something was wrong when I was in a meeting at work on a Thursday afternoon in mid-September 2020 and I found it difficult to focus on people. Their faces seemed slightly blurry and it was hard to concentrate. Putting it down to tiredness, I went home after work and mentioned to my partner, who is a nurse with Te Whatu Ora, and had an early night.
The next morning I noticed my fingers of my left hand were tingly numb, as was my left leg from the mid-calf down. Being a silly male I didn’t mention it to my partner, and I drove to work. I soon noticed on the drive my vision was a lot worse. The road seemed 10mm wide and everything was double vision. I closed one eye to ease the symptoms and managed to get to work. My work for the day was to upgrade an electrical pillar on a street in Dunedin. This was to be done live and we couldn’t turn the power off, so I decided to go home for a sick day as it was too dangerous with my vision the way it was to work with live electricity.
Once I got home my partner asked me what was wrong, so I mentioned the double vision and numb feeling in my leg and hand. She immediately rung Healthline who said I needed to get to the urgent doctors within 2 hours or get to A&E. Obviously the panic set in.
The urgent doctor had a look over me and sent me straight to A&E.
The hospital staff were great and kept me constantly in the loop of what was going on. I had an eye exam which couldn’t pick up anything. They suspected a growth in my brain which may be pressing on some nerves which could be causing my symptoms, so I was sent for a CT scan, after a 45-minute wait and sweating bullets with nervousness that my days were numbered I was given the all clear. I was sent home with an optometrist appointment at the hospital in a few days time.
I had a few eye appointments over the next couple of weeks to check how my vision was going. It was determined that a trip to neurology would be beneficial. Over the next few weeks, my vision and numbness improved, my symptoms were gone and I was back to myself.
The neurology team was fantastic and interestingly they had found some old carpal tunnel symptoms in my left hand from a few years back in my medical records which was put down to my repeated use of screwdrivers. This was probably my first phase of MS as I’m right-handed so i shouldn’t have carpal tunnel in my left hand from using tools, it was recommended to have an MRI. This was booked for late December. The MRI lasted about 2 hours. About a week later I got a follow up call saying they found something, and I had a second MRI on Christmas Eve 2020.
After an average Xmas break worrying about what it could be and a lot of googling symptoms (I don’t recommend this) I had my meeting with neurology where I was diagnosed with Relapsing-Remitting MS (RRMS). Our reaction was somewhat different to the normal reaction the neurology team sees. We were happy, had a hug and me and my partner went out for dinner to celebrate. It sounds stupid and sometimes I think selfish, but I wasn’t going to die, my life wasn’t over, I had my vision and mobility back, I had a great neuro team for support. I was determined to live my life as normal, MS is just something that has to live with me.
After another consultation with Neuro we decided that I would begin Ocrevus as treatment. I have Ocrevus every 6 months via an infusion over 6 hours. I go white as a ghost after my infusion and extremely tired but well enough in the morning to go to work and carry on.
Fast forward to today and luckily, I have had no further relapses. My partner and I have a wonderful 2-year-old girl and life is good. I get fatigued easily and can sometimes have my vision play up when I’m sick or stressed but I can’t complain. I follow the 12-spoon theory on my bad days. I play golf once or twice a week, I find hunting tougher now but still go out and enjoy it, you only live once. I stay away from social media groups with people who are affected by MS in other parts of the world, it’s hard reading their stories where they don’t have support like New Zealand and it brought me down.
I am one of the fortunate ones. It took 5 months from my first trip to A&E to have my first Ocrevus infusion. I have nothing but praise for the Neuro team in Dunedin who are always available to talk, and my family for their support.
I am sharing my story to show that the diagnosis journey isn’t always doom and gloom and the path to diagnosis is not always long and complicated.
Mike
