Myasthenia Gravis - in my terms

"Say what?!" 

"I beg your pardon?!"

"HUH?!"

"Myas-what-is?!"

These are many of the responses I have received when telling people what illness I suffer from.

Yes it is definitely a mouthful, but the explanation is quite simple.  It is a neuromuscular, autoimmune disease.

Every person has little antibody soldiers that fight off infection in their body, but unfortunately mine have become confused.  The message between my nerves & muscles becomes blocked by these little soldiers (acetylcholine receptors), & my muscles 'forget' to work.  For example I know I need to swallow, but when I am having a bad day, the food just simply won't go down.  It doesn't matter if it is a liquid, solid, hot, cold, or even my own saliva - when my muscles don't work; THEY DON'T WORK.  This has been the most difficult to explain to people, as often when I am choking, people will offer their advice in the sense that I should "just have a glass of water."  In fact during my worst stage I had to even mop up my own saliva as that was causing me to choke!  

Every person who suffers with Myasthenia Gravis suffers to different degrees.  This is why we are often referred to as 'snowflakes', as none of us are the same.

Mine started with my facial muscles.  One weekend I suddenly felt like it was an effort to smile & like my cheeks were numb.  Little did I know that this was the start of my issues.

Mum & I were moving to Durban at the end of 2003 & we thought perhaps it was the stress of moving & having to change schools that was causing my weakness.  It quickly progressed from having 'numb' cheeks, to battling to talk, to difficulty swallowing, & finally spread to all my muscles leaving me weak & lethargic.  I couldn't wash my hair on my own & walking up stairs was as bad as running a marathon.

We initially went to a local GP who diagnosed me with Globus Hystericus - a psychological illness that makes one feel as if one has a 'lump' in the throat; making it difficult to swallow.  He sent me to a psychologist, & eventually it was realised that this was something more serious & it was not simply an act or an eating disorder!

At the beginning of 2004 I was sent to the most amazing neurologist in Durban, KZN.  (At this stage I was sleeping away majority of the day, eating a quarter of a jar of baby food, & was battling to make myself understood.) She performed a few simple tests on me & diagnosed me almost instantly.  We were shocked.  We had never even heard of this illness, & were told that if we had left it much longer I would have died.

Photo showing my facial weakness

I was admitted into hospital straight away where I was told to take this little orange tablet that would miraculously help my strength improve - within an hour.  I thought this was absolutely ridiculous!  How can one little tablet make my muscles remember how to work????  My doctor must have been smoking socks!!

Anyways, I tried to swallow this tablet but kept choking on it - it would just not go down.  The poor nurse was instructed to crush this tablet with some water & syringe it into my mouth - it took over 3 hours just to swallow 5ml.  It sounds impossible, & I was exhausted by the end of it, but amazingly I could actually eat some dinner!  

Time went on, & after a dozen blood tests, CT scans, MRI's, X-rays & muscle tests, it was confirmed without a doubt that I did have Myasthenia Gravis, & that I would need to have my Thymus removed.  This has been found to be linked to MG, & is found directly behind the sternum.  This is meant to atrophy with age, but mine had grown right across my chest with funny little arms.  

The night before my Thymectomy - modelling the super sexy "bubble broeks"

I had many ups & downs during this year, & was put onto high doses of cortisone & chemotherapy to try suppress my immune system & make my 'little soldiers' remember what team they were meant to be fighting for!  I also had this amazing treatment called "Plasmaphoresis", whereby a CVP line is inserted just below my collar bone into my heart.  This is attached to a machine that separates the plasma from the blood cells, & returns my blood (along with synthetic plasma - i.e. antibody free) into my body.  I call this my 'washing machine'.  I would be attached to this for up to 4 hours daily - it provided a quick fix but unfortunately the results didn't last as long as what we wished for.

Plasma machine on my right.

Pipes going into my heart.

That first year I had to take off school as I was constantly in & out of my other 'boarding school', & could barely cope with washing my own hair, let alone carrying heavy books & walking around a school!

This is never the same from one day to the next - I could be feeling perfect today, & tomorrow wake up slurring & battling to swallow.  It is however usually a slow regression backwards, so I know when I am heading for crisis.  At the absolute worst your breathing is affected, often leading to having to being connected to a ventilator.

I am learning to live with this, & knowing my limits.  I do know I would never have been able to get through this without my amazing doctor, family, friends, & God.  I joke that I am having a "thspecial" day when I am battling, & try to see the good in every situation.  I do sometimes have my all-fall-down days, but most of all I am just grateful to be alive!