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My story
October 1981
I am not actually sure what month in 1981 it was, but, I was 18 years old and it was heading toward the years end.
I was living with my boyfriend at the time and one day I woke up and the top half of my left leg was numb.
Well, not exactly numb. Semi-numb? I dunno what the word for it is, but, it definitely did not feel right.
I remember at the time I thought maybe the contraceptive pill was
causing me to have a stroke or something (yes, I have always been a
drama Queen).................that being said, though, I am not one to
go running to the doctors for no real reason but this numbness bothered
me enough to visit my GP, so, it WAS real enough for me to take action.
When I told my GP, he stuck a pin in my thigh and asked me if I
could feel it and I said yes, because I could, but, not properly.
I felt something, but, not the sharp, pricking sensation I should
have felt.
Still, he told me, if I could feel anything, my leg was not numb and
I was probably over tired or something and not to worry about it.
So, I didn't. And after a couple of weeks, the numbness or whatever it was, went away................
March 1998
17
whole years before my next memory of anything being "wrong".
Maybe there was other stuff before that, but they were so minor I
do not remember them.
March
1998, I was 7 weeks pregnant with my fourth child and after an
ultrasound it was discovered there was no heartbeat and the fetus was
dead, so, I had to have a curette (minor surgery) to remove the pregnancy.
I
was used to this. It happened when I was 14 weeks pregnant with my
first child, back in 1985/86 and I had various miscarriages between
live births since then, so, the surgery was no big deal.
EXCEPT
this time, apparently, I kicked up quite a fuss while I was under the
anaesthetic. I have no memory of this, but, I was told I made quite an
impression on all the theatre staff that day. Apparently I was yelling
and screaming and really going crazy.
When
I woke up, I was on oxygen, due to the "bad reaction" I had to the
general anaesthetic. Once my oxygen levels were normal, they took
me off the oxygen and let me go home.
I
remember a couple of hours after I got home, my arms and hands started
feeling strange. I cannot describe it properly, except to say
that they felt heavy and I could not move them very well.
I went to bed that evening and awoke in the middle of the night and I needed to get up to go to the toilet.
Only
trouble was, I could barely get out of bed. I could barely move. My
legs felt like lead. I remember I did manage to get out of bed
and I used my sons pram as a walking frame to walk to the bathroom and
back and then I hopped back in to bed and went to sleep.
When
I woke up the next morning, my legs, arms and hands were still feeling
very heavy. I could barely move my fingers at all. It was really
strange and to this day it amazes me that I did not ring the doctor,
but, I did not. I put it down to the bad reaction I had to the
anaesthetic, but, also, I was very depressed at that time and found it
hard to make phone calls or even leave the house, so, I just kind of
brushed it aside.
That
morning, a nurse from the hospital actually rang me to see how I was
because I had reacted so badly to the anaesthetic the day before.
I told her that my legs, arms and hands were like lead and that I
could barely move. She too put it down to a bad reaction to the general
anaesthetic, but, told me if I was no better in a few days, to come
into the hospital.
I
gradually got better over the next couple of weeks and so, I had no
more contact with the doctors at that time until around 3 weeks later,
when I haemorraged and was in hospital for a few days. But,
that was totally unrelated to the heaviness in my arms and legs so I
did not mention it..............
May 1999
I remember that around April of 1999 I decided to do some walking in one of my many attempts to lose weight.
It was ok for a week or so, until one day, I was walking near my house and for some reason the whole world started spinning.
That is the best way I can describe it and even though it only lasted
for 30 seconds or so, it frightened me enough to send me straight home
and I gave up my early morning walks from that day. lol lol
Around a month later, the spinning/dizziness came back, but, this time
it did not go away. Not only did it not go away but, I could not
stop vomiting, despite the fact I could not eat.
I could not move my head, even a quarter of an inch without the whole
world spinning and me vomiting. I could barely walk, although,
with help from my husband (at the time, we split up in 2000), I did
make it to the car and he drove me to the doctors office, in Bacchus
Marsh.
What I remember most about that 15 minute drive is that, me who at the
time had a dreadful fear of cars and in particular, my husbands
driving, actually enjoyed that drive because for the first time in days
I was not dizzy or vomiting.
It really was quite bizzarre and for the first time in my life, I was
happy that my husband was speeding because the faster he went the less
sick I felt. It was really weird.
By the time we got to the doctors surgery, I was feeling quite confident that I would be able to walk and not vomit.
Of course as soon as I got out of the car, the vertigo and vomiting started again...............
I was really scared. I had never been so sick in my whole life. It was
terrifying and I was convinced I had a brain tumour (I have already
mentioned I am a drama Queen. lol)......
The doctor assured me that he was certain that I had a severe inner ear infection and not a brain tumour.
He did say that if I was to come back in a couple of months with the
same symptoms, then, he would be thinking brain tumour, but, in all
honesty, he believed it was a severe middle ear infection and that is
why my balance was almost non existant.
He gave me some anti nausea tablets (can't remember what) and I was
told to be careful and only take them as prescribed because if you took
too many it could cause your muscles to seize up or something..........
I was very careful about the dose I took and I do remember they did not
seem to work anyway, but, something must have helped because within a
few days, though my balance was still bad, the world no longer spun
around and I was no longer vomiting. So, I put the whole incident
behind me and got on with my life...
August 1999
I
went away for the weekend with a friend. It was the end of winter and
although the weather was cold, I remember I was hot, all the time. This
is my first memory of heat intolerence, but, I have had heat
intolerance ever since then.
On the monday, I was feeling a bit off balance and though I feared the
Vertigo was coming back, I convinced myself it was my imagination.
Unfortunately, it was not my imagination and by the end of that week I
was so very ill, I could not get out of bed and the doctor had to do a
home visit.
Now I really was convinced I had a brain tumour. I remembered what the
doctor at Bacchus Marsh had said and so, because I had a return of the
dizziness and vomiting, I was sure there was something really seriously
wrong.
This doctor (who became my permanent GP after this) sent me to a
specialist, who sent me to the emergency department of Western general
hospital.
I remember my ex husband, wheeling me in a wheel chair and me
holding a dish and vomiting in to it, in the street on the way from the
car to the hospital and then in the public waiting room and me not
giving a damn that I was sitting there in full public view, constantly
vomiting. LOL LOL
I was really ill. I actually lost something like 12 pounds over a
10 day period, because I could keep nothing down. All I could
manage was a tiny sip of water every now and then and I would still
vomit. I ended up on a drip because I was so dehydrated.
I ended up in hospital for a week with this lot of vertigo. I was not
allowed to go home until I could stand up without help of any
kind.
Again, I was told it was an inner ear infection or virus.
By now I definitely did not believe that. I truly thought I had a brain tumor.
September 1999
I
got out of hospital on the Friday and by Sunday, I thought that there
was something wrong with my right eye. My vision seemed to be not so
good. Again, I thought it was probably my overactive imagination.
Again, I was wrong. Within a week I was totally blind in my right eye.
Of course, to me, this was just another sign that I had a brain tumor. lol lol
My GP sent me to an Opthamologist and though he did not tell me what
was wrong with me, he did seem to know what was wrong and sent me with
a referal to the emergency department of the eye and ear hospital.
After some tests, I was promptly admitted as an in patient, put on a drip of IV steroids and booked in for a MRI the next day.
To cut a long story short, the results of the MRI were that I had alot
of plaques on my brain and with all the other signs, they gave a
diagnosis of definite Multiple Sclerosis.
Appointments were made for me with a neurologist (who by
coincidence, went to the same school as me in 4th grade. He sat behind
me in school and I remembered him immediately.)............
He has been my neurologist ever since.
November 1999 to now (November 2007)
Alot
has happened since that diagnosis. My marriage broke up, permanently,
in mid 2000. I have been on my own ever since. My choice, but,
lately, I finally feel ready to maybe consider dating. Maybe. Only if
the right person comes along...........
Anyway, I was on weekly Avonex injections from November 1999. I
went off Avonex in December 2001 and in March 2002 I started on
Copaxone daily injections. I had to go off them in December 2006,
due to severe post injection reaction (supposedly rare, but, they
became constant for me and my body could no longer tolerate it).........
I had been mainly relapse free during the time I was on medication until March, 2007.
What I mean by that is although I did not have any major MS attacks
(except for a mild bout of vertigo in August 2005), I have had all the
other MS stuff that is annoying, but not major.
Numbness, tingling, fatigue, balance issues, cognitive issues, etc
etc.................. Nothing major and easy to learn to live
with.
Unfortunately, 2007 has not been a good year for me. In March and
April this year, I had paralyisis attacks down the right side of my
body.
I would feel it starting in my right foot and it would gradually creep
all the way up my right side, even to the right side of my face.
These attacks lasted up to a minute each and I was having well over 100 attacks a day when it was at its worst.
During these attacks I lost all strength in my right foot, leg, arm and face. It was wierd but, not too bad.
In July I had a major attack of Optic Neuritis which left me blind in
my right eye for a few months. I now have most (but not all) of my
eyesight back. I figure it is as good as it is going to get. I can live
with that.
In September my liver acted up. I had been on some trial oral drugs,
for my MS, but, monthly blood tests for liver function showed my levels
going up. They hit 1000 in September and I had to immediately go
off the drug. It took some weeks for the level to come down to 50,
which is considered normal.
I had dreadful fatigue when my liver was not functioning properly.
Today, I am feeling better than I have all year. I am very grateful.
I have an appointment with my neurologist on Nov 27th and I have been
given the next few weeks to decide if I want to go on beta interferon
injections again.
I did have severe depression while on Avonex (which is why I stopped
taking it). I am thinking I will go on Rebif. I have heard good
things about it and I like the idea because you only inject it every
2nd day and it is not an intra muscular injection like Avonex.
So, I think I will give that a try..............
January 2008
I
started Betaferon injections in early January and so far, so good.
Learning to mix the drug was the hardest part, but, now I am so used to
it, it is second nature to do it. I inject every 2nd day.
Things
are going well. My right eye is still a bit dodgy. I will never get all
the vision back and some days my eye is better than other, but, for the
main part, I am feeling better than I have for several years. :0)
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