Matthew's Story

I remember finishing a game of rugby back in 2008 and struggling to lift my arms. It was probably the best I've ever played but from that moment on, my life changed.

I had severe weakness in my arms, especially anything triceps related. I went from being a strong gym goer to someone who struggled with basic weights. As shoulder injuries are so common in rugby, I put it down to that and the physio agreed with me. Sadly, things continued to deteriorate and after seeing a specialist physio, it was put down to a C6-7 injury in my cervical spine. I started to become more fatigued in general and running felt like a huge effort.

In 2011, I was admitted to hospital with facial paralysis and double vision - my eyes weren't working as a pair and I had droopy eyelids. I spent about five days in hospital conducting every test under the sun, including a lumber puncture - they still couldn't find what was wrong. In my follow up appointment, the neurologist put it down to 'one of those things' and no diagnosis was given. After emigrating to Perth, Australia, I got an email from the specialist confirming myasthenia gravis and that I should go and see a neurologist. I was initially put on 60mg of pyridostigmine to take as and when, and some days I was taking up to 10 pills a day. I saw a huge improvement initially but after a couple of months, things got worse. I was struggling to walk and my eyes were off again, day-to-day efforts seemed like a huge task.

I had a thyroid scan and it wasn't particularly enlarged, so we increased my medication to receive six hours of infusions every two weeks, 3x500mg of mycophenolate twice a day (total 3000mg) plus 4x60mg of the pyridostigmine and I saw a huge improvement. I started playing rugby again and training hard in the gym - this continued for my time in Perth until 2014.