I think I had symptoms as early as 2016; I clearly
remember an incident going bike riding, trying
to keep up with my kids. Fatigue, a general
shakiness, being often short of breath and
weakness/lack of endurance in my arms and
legs had been slowly creeping up on me for
months, but I was coping until that day, when
we had a bit of a race on a bike path. 

 

The kids left me for dead - almost literally - as I went to
jelly, with sudden and severe respiratory
distress and collapse. By the time anyone was
able to help me, I was starting to recover, after
lying on the ground gasping for some time.
I had similar intermittent incidents after that
which seemed to be getting worse, but my GP
dismissed them and suggested the symptoms
were due to me being overweight, unfit and
menopausal.

 

I was shocked, and to be honest, a
bit embarrassed at my collapsing tendencies, so
I really tried to hide my symptoms. Hindsight is a
wonderful thing, but if I could go back in time,
I'd definitely get a second opinion.


My work at the time involved a lot of driving to
remote cattle stations for disease investigations,
which requires doing postmortems on dead
cows. It's very physical work, cutting up a dead
cow! I couldn't get through a whole postmortem
without collapsing, so I used to work really fast,
and have the doors of my ute open, so that
when I was so shaky and short of breath that I
was near collapse, I could dive into the back
seat and recover. I used to refuse help so no
one would see me doing this, because my Dr
had given me the impression that I was just old
and unfit.


I wasn't diagnosed until 2020, when the
cardiothoracic surgeon who was going to
remove my thymoma, asked the right questions,
didn't dismiss my experience (actually, he was
suitably horrified!) and refused to operate until I
was screened for MG. He referred me to a
neurologist, and I was diagnosed the day I had
an EMG test. I was 51.


After 4 very difficult undiagnosed years, I was
given to understand that post thymectomy, I'd
likely improve rapidly. But I was unlucky, had a
series of complications, and my MG went from
mild-moderate symptoms at diagnosis, to
severe and treatment resistant. My relief at
actually having a diagnosis and treatment,
turned quite quickly to disbelief and shock, as I
got even worse quite quickly. The last 5 years
have been very challenging. I'm so grateful that
my very persistent neurologist has now found
the Goldilocks zone for medicating me, and
things are finally turning around.

Having unstable and treatment refractory MG
meant I ended up resigning from work in 2023.
When I was first diagnosed, I was told I'd be a
good candidate for full remission, so I always
assumed I'd respond to medication within a few
weeks or months and get my life back. It didn't
happen that way at all.


Deciding to leave the career I loved, because of
my illness, was incredibly distressing. It also
forced me to come to terms with the fact that so
much of my identity and sense of self was tied
up with "what I do", to the point that it was an
intricate part of "who I am". I felt like I "became"
an illness, and that a large part of me had been
stripped away or died.


I want everyone to know that MG sucks!


My greatest triumph is being able to go back to
uni to further study and be successful at it. I was
in a deeply miserable black hole after I had to
give up working. A chance encounter threw me
a lifeline - and I am now back in the university
system, doing a research degree part time,
investigating management of unowned cats in
rural Australia. I never thought this would be
something I'd be capable of, but I am loving the
challenge, and the support of people within the
academic sector.