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Below are some stories from our members. If you
have a story you wish to tell about your Myasthenia Gravis experiences
please email info@myasthenia.org.au
Glenda's story - Glenda
Bidner
Beyond the limits - Clete
Gress
Mestinon doesn't taste half bad anyway - Walter
Bass
The Myasthenic Bride – Joyce Engledew
My MG experience to share - Paul Boey
So you can't see straight? Go and see a quack!
- Walter Bass
Glenda's Story
Glenda has been a member of the
Australian Myasthenia Association of NSW for many years. Her experience
with Myasthenia is set out below.
"Hi, my name is Glenda Bidner,
I have now had Myasthenia Gravis for 26 years. What you are about
to read is my first 5 years with this disease.
My trouble started when I was about
17 years old, not long after leaving school. I first noticed,
one night whilst trying to knit, that my fingers went a bit numb.
Not long after this, whilst trying to board a bus to go to work,
I just collapsed. It was like my legs weren't there. I had noticed
a few days earlier that my legs were tired and heavy in the morning,
but I put no importance to this.
A doctor I saw that day, and he
said that I was anaemic and put me on iron tablets. A few days
later, the same thing happened again. I was then sent to a Neurologist,
who after running a few test, said that I was quite normal and
healthy and to go home and forget about it. However I started
to collapse more often, and by this time I was getting really
scared of buses as I could see myself falling every time I went
to board one.
I started to walk to work to avoid
the problem with the bus. However, this also became a problem
as I would get really tired in the legs, and would often fall
just trying to walk up a gutter. I would often have to be driven
home by some kind soul. I was then sent to a second Neurologist
who also said I was all right and that nothing was wrong.
Now after two professional opinions,
it was thought to be psychological and I was sent to a Psychiatrist.
As I was in a car accident just before this all started, it was
thought to be all a nervous reaction.
The first Psychiatrist was in Sydney
and we had to travel from Wollongong every few weeks for about
8 or so months. I then started seeing a Psychiatrist in Wollongong.
I was under his care for 2 or more years. I continually got worse,
telling him all the time of every new symptom. By this time, I
had double vision, my speech was slurry, I would try to play squash
but would fall over, and I could not walk long distances without
assistance and normally would stumble and fall. I could not walk
up steps I'd fall down and really hurt myself. I could no longer
do my own hair because I couldn't hold my arms above my head.
I was having trouble chewing and swallowing, so I would go for
a couple of days eating barely enough to keep a sparrow alive.
I would also choke and get a lump in my throat when I tried to
eat. I lost about 16 kilos and was looking quite sickly. I could
not smile or even keep my eyes open for very long. A hot shower
would make me very weak and I would often collapse not long after.
I could not dress myself and would often fall over just trying
to pick something up from the floor. I would only have to lift
my leg to get in the shower or get in the car and would fall over
backwards. I was becoming a nervous wreck and could not understand
why all this was happening to me.
The Psychiatrist said I was doing
all of this to myself that I was putting it all on for attention.
Also during this time I tried other
things to try and find out why I was sick. I saw a Naturopath,
a Chiropractor, and even tried Hypnosis and Acupuncture - all
to no avail.
We then asked the Psychiatrist to
run more tests to see if something would show up. He agreed, but
we didn't know until we got to the hospital that he was putting
me in the Psychiatric Ward. All they did in this ward was give
me huge amounts of Tranquillisers and Anti-depressants, which
gave me a lot of trouble with swallowing. I was like a walking
zombie, and wanted to sleep all day. This was supposed to make
me forget my problems, but only added to them! I cried a lot in
this place, and promised to be good so they would let me go home.
That night I had a really bad attack with my breathing and an
Ambulance had to be called. When they arrived I had collapsed
on the floor and stopped breathing and had to be revived. This
was terrifying for my family and me. The Ambulance driver said
I was on enough medication to knock out a horse, and should talk
to the Doctors at the hospital to which I was rushed for an examination.
The Hospital was not much help.
The Doctor said he still thought it was all nerves and to go back
to my Psychiatrist. This I didn't do. I got married 3 months later,
even though my Psychiatrist had told my parents that I was too
mentally ill for marriage when they had discussed it with him
before. We had quite a small wedding, as I was so sick.
I was not seeing any Doctors at
this stage, as I was sick and tired of being told there was nothing
wrong with me. I was trying to do everything around the house
that I could but it was very difficult when I was so weak. I battled
on as best I could with the washing, ironing, cooking and cleaning.
I continued like this for about a year and then I got so bad that
I could not even get out of bed and dress myself. I was so sick
that I could not be left alone and had to go to my parents' house
in the afternoon to be looked after when my husband went to work.
One afternoon I was really bad and could barely sit up in bed.
I had trouble breathing. It was then that my mother arranged an
appointment for the following morning with a new Doctor near us.
I had to be helped into the surgery.
The Doctor was astonished when he saw me, and made an appointment
with a 3rd Neurologist the next day. I didn't want to go but did
so just to please everyone. I'm so glad I did - as it was this
Doctor, having asked a lot of questions and carried out a Tensilon
Test, who finally put a name to my problem.
After nearly 5 years of searching,
I finally found out that I was not nuts as everyone thought. I
had a disease called Myasthenia Gravis.
I hope that telling this bit of
my history, I may help someone else."
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Mestinon doesn't
taste half bad anyway - Walter Bass
"I've just had the joy of being
in remission for a year. My morning dose of sandpaper lips disappeared,
my two end fingers on my right hand could type again, my vision
improved, my morning awakening was not accompanied by a dose of
Mestinon, my watch didn't beep every five hours for the next dose,
and people stopped saying, "Begyapardon" every time
I said something. I still took Prednisone and Imuran, but my breakfast
wasn't all pills. I missed the Mestinon so much I even took to
baked beans because they looked like it! As the ABC's resident
cook says: "Bliss!!"
But the other day it came back!
It began with dry lips, which I tried to ignore. Then I found
it a bit hard to talk, which I remedied by remaining silent. My
two fingers stopped working properly so I just used them for decoration
and routine tasks like shaking hands and waving to people. Finally,
when I found that my teeth bounced off hard food like apples and
raw carrots, I called it quits and reached for the Mestinon.
More bliss! I was almost back to
normal. Sure I sounded like a newly arrived European migrant,
but after all, I came to this country from Europe when I was seven,
so I developed what you might call a "delayed accent".
But my chewing went back to normal, and my fingers worked again,
and Mestinon doesn't taste half bad anyway, even though it does
give me cramps which have my poor wife waking from a deep sleep
to get me a hot cloth to put on them. And I feel well even though
my vision plays tricks on me, like occasionally seeing two wives
when I'm sure I only married one. Still, maybe she has a twin
sister stashed away somewhere, only it must be a close relationship
because they both do the same things at the same time!
I'-v-e f-o-u-n-d t-h-a-t s-p-e-a-k-i-n-g
m-o-r-e s-l-o-w-l-y stops people from saying "begyapardon?".
But I find that the hardest of all things to do. Now my friends
just look at me as if I've lost my marbles, while people who don't
know me think I'm retarded. Still, you've got to look on the bright
side. They no longer think I'm drunk!
I suppose the message in all this
is that if you go into remission, enjoy the time it gives you.
It may be years, it may be months and it may only be for a couple
of weeks, but enjoy it while it's there, and don't contemplate
jumping off a building when it's gone. Look forward to the next
time it comes. It might never happen, but you've seen it happen
once, and there's no reason why it can't happen again. If you've
never been in remission, it's something to look forward to.
Most of have realised that there
is a definite psychological component to this odd disease, and
that you feel physically better if you're feeling happy and positive.
Many of us , for instance, react negatively, mentally, to weeks
of grey days. I know I do, and I'm sure that my Myasthenia reacts
negatively to my negative reaction (now there's a mouthful). If
you have similar experiences, recognise them for what they are,
and keep calm and positive. It'll go when the sun comes out, and
it always comes out!
Anyway, believe it or not, my fingers
tell me it's time for my next delicious Mestinon. Yum!"
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The Myasthenic Bride –
Joyce Engledew
"On 2 March 2003, I was wed.
MG has been my mate for around 12
years (at least from when symptoms became regular). I am happy
to say that I am in a kind-of remission – I take medication
only a couple of times a month (as long as I do not physically
exert myself and I remain relatively stress free – which
is pretty hard for a drama queen like me!).
At my engagement party, I felt marvellous
and the taking of Mestinon did not even occur to me. That is,
not until the photography started. The first few photos were easy
enough … then it hit! My smile! It disappeared! My eyelids!
Oh how I wished that they’d stay up by themselves! The more
I fretted, the less facial control I had. And despite repeated
facial rest periods, many of the photos show that all I could
muster was the dreaded sleepy-eyed, myasthenic grimace. AARRGH!
However, a valuable lesson was learnt
- Mestinon on the wedding day is a MUST, remission or not!
In planning for the wedding, I tried
to accommodate MG wherever possible.
I wanted an autumn wedding to avoid
weather extremes. The heat and humidity of summer really drag
me down – every movement of limb becomes a chore. And very
cold temperatures turn my fingers and toes to rubber (my fingers
pretend to listen to me – they bend, they stretch, they
look like they grab hold – but ask them to pull a button
through, or a zip up, and it is mutiny of the digits!). On my
wedding day, I did not want to be conscious of what was physically
happening under my skin!
2 March was the only day in autumn
that both church and reception venue were available (which was
close enough to summer to cause a little concern).
It was not until after the invitations
were posted that I noticed that the reception venue did not have
air conditioning. I had been there umpteen times. It is a historic
building and I was taken with the high ceilings, the art work,
the ambience and the harbour views. Who looks out for details
such as air vents???
“You should have told me!”
I cried to the functions manager.
“You didn’t ask” he said.
“So how do you cool the place down?” I asked.
“We open the windows”, he responded.
“What if it is over 30 degrees, like it is today?”
I countered.
“We are in a huge sandstone building with huge windows,
on top of a hill on Sydney harbour”, he said. “And
it’s not hot now, is it?”
My fiance, sensing my rising panic and knowing the drama queen
in me, tried to assure me that it NEVER gets hot at the top of
the hill in Manly. It was obvious that neither the functions manager
nor my fiance had ever participated in Lebanese folk dancing (my
parents are of Lebanese background). “It will be OK”,
soothed my fiance. “It will be OK”, soothed the function
manager.
“Oh, my! WHAT ARE YOU GOING
TO DO????” shrieked my bridesmaids, my mother and my sisters-in-law.
So I did the only thing I could
do - I prayed. I prayed fervently to God and to Blessed Mary MacKillop
that we have a mild day. And if we absolutely had to have heat,
I beseeched them to hold back the rain, as possibly worse than
any MG symptom on my wedding day, would be FRIZZY hair on my wedding
day!
The myasthenic bride needs to consider
comfort before style. Myasthenics are a lot more conscious of
muscular exertion than the average person.
Heavy bridal fabrics and finicky
styles were no-go. An overly long or heavy train on the gown could
tax my arm if it were to be carried for any length of time.
Sling-back shoes were also out –
they required more energy to stay on than the less stylish (ok
ok, much daggier but who’s looking under the big skirt?)
lady jane buckle ups.
My bouquet had less flowers than
I would have liked, but it was fairly light.
The make up was styled to compensate
for droopy eyelids. One fantastic discovery was Lipfinity –
a lipstick which really does last the advertised 8 hours! (This
has nothing to do with MG at all, but it sure had all of us girls
excited! Max Factor did very well that day).
The photographer was instructed
to take photographs quickly (none of this, “on the count
of three” business). The parents and fiance were instructed
to warn me if the smile sagged (I am sure that you have experienced
this … you think you have the widest grin, and all the effort
exerted should produce a beautiful smile, but no, it’s only
the MG grimace).
Well, the day turned out to be beautiful.
God came through with sun and 21 degrees. Just perfect! The church
was beautiful, the ceremony was beautiful, the photo shoot by
the harbour was beautiful.
At the reception, the entertainment
was great, the food was great, and everybody was happy (and yes,
the venue did heat up). The face started playing up later in the
night – but what a wonderful way to succumb to MG –
I don’t think I have smiled nor danced so much in my life!
I found it difficult to speak properly as my jaw and mouth started
failing me, the eyelids were a battle, and as the photos were
to later show, the smile had been usurped by the grimace. But
amazingly I kept on dancing until the very end!
Despite the challenges of MG, I
had a great time. I never thought that I would say “It didn’t
even occur to me!” as often as I did during the planning
of the wedding, but now I know. And as a happy wife, I hope to
never, ever go through it again!"
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My
MG experience to share - Paul Boey
"Before being diagnosed with
MG in 1998, 8 months prior I had double vision with my right eye-lid
dropping. Initially I thought my eyes were playing up and even
my eye specialist was fooled.
When my family and I were holidaying
in Hadjai (Thailand) the effect became prominent. I became breathless
while walking short distances and I needed the air-conditioned
hotel room to revive. Heat was my worse enemy. When I went back
to Malaysia I consulted a GP and his remark was that there was
no cure for MG.
We were desperate and immediately
consulted our family GP on arrival, confirm it was MG and she
referred me to a neurosurgeon, who in turn admitted me to RPA
Hospital for investigation and it was found that a thymectomy
was necessary. Pre and post op, I underwent plasmapherosis. The
surgeon removed a benign thymoma the size of a ping pong ball.
I was put onto Imuran (150mg/daily), prednisone (25mg/daily) and
Mestinon (60mg/daily).
After the operation I was still
weak but my eyelids did not droop. I still had double vision and
my facial muscles were numb. I had poor appetite and could not
chew, felt bloated and my overall muscle weakness was still present.
I was only capable of eating small meals and swallowing was still
a problem.
We contacted the Secretary of the
MG NSW association and he explained that he also suffers from
MG and was on a lot of health supplements like Gingko Biloba,
Syberian Ginseng, Flaxseed oil, primrose oil, bilberry and multivitamins.
We added on Bio-ace, Folic Acid, Glucosamide, Calcium, Nonni tablets
and later on Kefir and GTF milk powder (which contains colostrum
and trivalent chromium). Gingko was the catalyst that triggered
my muscles to work and improved my chewing. Calcium helped to
improve my joint ache, but I later added Glucosamide, which was
more effective.
I tried Kafir that reduced my bloated
abdomen. GTF (Glucose Tolerance Factor) improved my general condition
ie made me less tired, more energetic, and reduced my muscle weakness
and joint aches. I could speak louder and for a longer period
without being short of breathe. Generally, I feel good and have
no side effects from the health supplements.
At the moment I am on 75 mg Imuran
and 30 mg Mestinon and continue to take only Gingko, GTF, Folic
Acid and Glucosamide. I see my neurologist once every 2 months.
I do hope this information is helpful
to my fellow MGers. For the Kefir and GTF supplements please email
me at pboey@hotmail.com or phone me on 0412 823 312 for more information."
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So you can't
see straight? Go and see a quack! - Walter Bass
When I started telling people that I had double
vision and difficulty with bright light, and I found it hard to
chew my way through a plate of custard, and my smaller fingers
refused to hit the letters on my typewriter, so most of my letters
began with the words: "Dsar ser," and ended with "Yiors
fathfilly," and my legs sometimes felt as if they were full
of glue, they all said:"yes, but what are your SYMPTOMS?"
After I'd convinced them that they were my symptoms,
a lot of them put on their thinking caps. Poor Walter, this, after
all, must be curable with what grandma used to use for grandpa's
gout. Sounds a bit like gout, anyway. Grandpa used to stumble
home cross-eyed sometimes on Saturday nights and grandma used
to put him to bed with a cold poultice on his head and a hot one
on his tummy, and he was OK in the morning. Have you tried that?
Well, no, not really. Oh, you've got to try that. It might fix
the problem. It didn't. It gave me blisters on my tummy and the
flu.
So next came the herbalist someone talked to. He
told my friend that - yes, he'd had something similar and he'd
cured it by putting comfrey on his eyelids. So on went a glob
of what looked like greasy spinach. It didn't do much for the
double vision, but it helped the trouble with bright light. Everything
went dark green for a couple of days! Vitamins A-Z didn't do much
either. Neither did twenty types of herbal tea, acupuncture or
a concoction made of boiled seaweed, honey and cumin seeds. One
dear old soul even suggested meditation but, since I had bad hips,
I couldn't sit cross legged on the floor without screaming so
that was the end of meditation.
Then an eye specialist who should have known better
failed to recognise the symptoms of myasthenia and recommended
a course of exercises for the double vision. They were great!
The double vision became no vision at all as my eyelids, having
had enough of all this comfrey, exercise and battered taste buds
simply refused to open at all!
So by the time I staggered up the steps of my GP's
surgery, groped for the waiting room door handle, stepped on the
five year old boy playing on the floor , apologised to his mother,
and slumped into a seat, I was ready to jump out the window if
only I could have found it! It took just two minutes. My GP looked
at me, held a finger up and asked how many I could see. Silly
question. Two, of course! Then he said:" I know what you've
got. You've got myasthenia gravis……very interesting…..you're
the first case I've seen. Hang on, I'll get my partner".
So the partner came and they held up fingers and looked at me
as if I'd just arrived from Mars and found me "verrrrry interesting."
So did the specialist. He asked me how I felt about
having my thymus out. I thought he was trying to tell me that
my zipper was undone, but it dawned on me that he was considering
having me cut about. He sent me for a cat scan, and they found
me verrrrrry interesting too. But when I took the pictures back
to the specialist he said my thymus could stay in but I had to
take Prednisone and Mestinon and Imuran.
Just after that I went to Germany and a medical
cousin recommended something that actually did work for quite
some time. It comprised daily drops and injections of a compound
made of snake venom and, for a while, it seemed to make a definite
improvement in my condition. But then, a couple of years later
there was a delay in delivery and I ran out. Although I resumed
the treatment a few months later it was never the same. I wasn't
sorry because it cost me $4000 a year and endless stressful weeks
waiting to see if the parcel would arrive. As well as that, the
injections in my sit-me-down was creating hard lumps of scar tissue,
and my poor bottom was starting to feel like a pineapple.
There's a moral in all this. If you've got myasthenia,
try anything you like. As with me, some of it may work. But whatever
you eventually decide to do, let the experts look at you first!
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