If you are a fan of ‘Empire’ (as I am) and have not finished watching the Season, please be aware that this article contains a small spoiler.
I was delighted to hear that US TV show flavour of the month hit ‘Empire’ has the lead character Lucious Lyons develop Myasthenia Gravis (MG) after initially being misdiagnosed with Amyotrophic Lateral Sclerosis (ALS, aka Lou Gehrig’s or more commonly known as Motor Neurone Disease). MG is a chronic, but treatable and very rarely fatal. This was the main reason I started watching the show.
Today I write about my journey of discovery as I learn to live with MG.
In April 2012 I looked in the mirror and noticed that my left eye was drooping a little. I thought nothing of it and dismissed it as probably a sty or something similar. However I noticed it again in May while applying make-up and thought it was a bit strange that it still looked the same but again wasn’t overly bothered. It wasn’t until I visited my family in Birmingham a few months later and an aunt questioned it did I start to take notice. She (wisely) said “always check out changes in the body it could be nothing but it might be something”.
So off I went to my local GP not before Googling ‘droopy eye’ frantically…don’t we just love Mr Google? I came across a strange sounding condition and I decided to write it down and ask the GP about it. He however decided to put me on antihistamines and brushed it off as an ‘allergic’ reaction. I went back when these hadn’t worked. I was finally referred to a neurologist and had various tests done which included blood tests and a really rather painful EMG. The neurologist told me “you have a condition called Myasthenia Gravis”, the same strange sounding condition I had written down months earlier and shown to my GP which he had duly dismissed!
MG is a rare autoimmune disease that affects the muscles and causes weakness. It can range from very mild to very severe symptoms and unfortunately it can on occasions be fatal, although generally it can be well controlled. As I felt relatively normal and seemed to be in the early stages of ocular MG I wasn’t put on any medication but did have a number of CT scans and an MRI which showed that my thymus (the gland primarily affected in MG) was enlarged. I now have annual checks to monitor the growth as some MG sufferers need to have their thymus removed. It wasn’t until the summer of 2014 that I started to feel unwell and really fatigued. Further tests showed I had Graves disease (overactive thyroid) and was promptly put on medication. My mother had been diagnosed with the same condition in 2012 and had had her thyroid removed. It is very common in autoimmune suffers to have several autoimmune conditions.
There are a number of contraindicated medications that can make MG worse and unfortunately the beta blocker I was put on for my thyroid treatment exacerbated my MG. I had trouble speaking, swallowing, chewing and blurred vision so I was put on medication which I am still on now. My life has definitely changed a lot in the last 18 months but I am thankful that although my MG is now generalised it is well controlled and relatively mild. Taking lots of regular rest helps. It can be frustrating because I often ‘look’ well so it is referred to as an invisible illness. I read this quote the other day:
“the worse thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are”.
I am in a number of MG groups/forums which highlight the need to raise awareness of this condition as I feel that people have the condition but are yet to be diagnosed.
June is MG awareness month and I hope this article helps. More information is available at www.myaware.org or alternatively please feel free to contact me.