This is the story about how I went from a highly functioning
and independent 30 year old, working overtime every week, to being totally
blind in one eye and completely numb from my chest to my toes in under 1 week;
the affects of which lingered for months and still continue to present day. This is how I was diagnosed with Multiple Sclerosis.
I woke up Thursday morning on December 20 with a vague pins
and needles feeling in my legs. I had spent approximately 40 hours total in the
previous 3 days in my car doing long surveillance days so I attributed the
sensation to poor circulation. As the day wore on, the sensation did not
dissipate and lingered the following day as well. I decided to take Friday off
of work and spent the day massaging my legs and feet. Saturday I woke up and went
to work, although I noticed the pins and needles sensation had strengthened.
Additionally, the feeling numbness had begun slowly travelling up my body. I
was finished work around noon that day and as I was driving home, I realized I
couldn't feel my legs and feet. I also started noticing there was
something wrong with my left eye – it was uncharacteristically sensitive to
light.
Luckily, I was able to see my doctor right away. By late
afternoon the numbness around my ribs felt like a thick, tight belt around my
body and my left eye was gradually going out of focus. After a series of
physical tests, the doctor ordered an “urgent MRI” with the hospital –but don’t
let the word “urgent” mislead you. Thanks to our stellar healthcare system, the
soonest available appointment was January 17th. The current date was
Dec 22. I was told to keep an eye on things and to go to Emergency if things
progressed.
The next day I travelled to my dad’s for Christmas and by
Sunday night the loss of feeling in my legs was so extreme it was like I could
tell that my legs existed but couldn’t feel the clothes on my body. My vision
was rapidly declining and I couldn’t focus on anything unless the bad eye was
covered and stopped from distracting the good eye. I thought back to about a
year and a half prior when my right foot suddenly stopped working – I walked
with a limp for about 4 weeks and then it magically went back to normal and it
was as if it never happened.
Monday morning, Christmas Eve, I had trouble walking and
decided I needed to go to the hospital. My dad drove me to the ER in London.
Unfortunately, the most they would do for me there was a CAT scan to ensure
nothing was fatally wrong with my brain. I was told by the ER doctor that the
neurologist would not want to perform an MRI because I had a Toronto address.
Seriously, this is what he said. It was also the first time I was explained
that all these symptoms point to Multiple Sclerosis and that getting back to Toronto to have an
MRI was imperative. As I sat in emerge waiting for my CAT scan results, I could
actually see my vision disappearing. It started as a line across my field of
vision, just a straight line across of grey which slowly expanded outwards.
Despite telling the doctor this, he continued to tell me if things get worse
when I leave, to go back to ER. I was like, um, I am going blind right now, as
I sit here in the hospital and you’re telling me to come back if it gets worse?
After a CAT scan came back negative of any immediate fatal
risk, they said there was nothing more they could do for me in London so I had
no choice but to leave with a note from the hospital saying I needed to see an
urgent neurologist (…in Toronto). I spent the night at my mom’s in London as I
helplessly watched my vision disappear to nothing.
Christmas Day, I woke up 100% blind in my left eye. The
pupil was non-responsive to light, I could barely walk, I couldn’t feel my own
legs touching each other, couldn’t feel my own ass on the toilet seat and still
did not have a confirmed diagnosis. I needed to get to Toronto immediately.
My boyfriend came down and drove me back to Toronto later that
day. I called the MRI department where my “urgent” MRI was scheduled for late
January and was told that the MRI is actually closed for Christmas and there
were no neurologists around. I had no choice but to wait two more days. Blind
and paralyzed and absolutely nothing I could do about it, despite seeking help
long before it had reached this stage.
Thursday, December 27, exactly one week after my symptoms
first appeared, I saw my family doctor again. Needing assistance to walk at
this point, the look on the receptionist’s face who had seen me on the previous
Saturday was nothing short of shock and only added to my already panicked state.
Lights were shone into the blind eye with zero response. I waited while he
called St. Michael’s Hospital and spoke in a hushed voice in the other room. When he returned, he informed me a
neurologist would be waiting for me at St. Michael’s Hospital. Today. Right
now.
The next few days that followed were undeniably the worst in
my life. I was admitted to the hospital after waiting in the emergency room
with no idea when I would be released. I had an unconfirmed MS diagnosis and
had to wait, body numb and all with no treatment yet until the MRI was available.
The blindness in my eye, I had now learned was caused by optic neuritis,
increased the emergency level of the situation: the longer I was blind, the
less chance there was of my vision fully returning. On day 2 of my impromptu
hospital visit, the MRI was ready for me. My results came back and finally the
diagnosis was confirmed: several active lesions located on my brain and spine,
which were concurrent with multiple sclerosis. I was hooked up to intravenous
steroids for three treacherous days and the best I could hope for was to be out
by New Year’s Eve.
The steroids made me feel like I was crawling out of my
goddamn skin and I had no appetite since I had little to no sensation in my
midsection. Alas, bless the nurses who continued to bring me milk, sugar water
they called juice, and other various foods I shouldn’t be eating. I was pretty
helpless but thanks to being in the modern world, I at least had the internet
at my fingertips to find out as much as I possibly could about this mysterious
illness that’s been hibernating inside my brain for god knows how long like a
fatal Jack-In-The-Box. Surprise!! Welcome to your 30s!!
So they released me Sunday, December 30, and not because I
was getting better but because I think I was visibly unimpressed with being
forced to stay in the hospital. In fact, on my last day in the hospital I began
experiencing brand new symptoms which were thought to be related to the lesions
on my spine. I started losing dexterity and function of my hands completely
until I couldn’t even write or type anymore. I had a shitload of oral steroids
to continue taking for the next couple of weeks, along with a cane for walking.
But I made it home for New Year’s!
What I went through in the month of January is something I
wouldn’t wish upon my worst enemy. I began keeping daily notes on a voice
recorder about the physical symptoms I was experiencing along with emotions,
but both proved to be such a rollercoaster I stopped after only a few days. One
day I would feel ok and optimistic and the next I would be thrown into a fit of
spasms and depression, crying and unable to get out of bed. I would feel like I
was improving and then suddenly I’d lose feeling in my feet again, or the right
side of my body would feel like it disappeared. I couldn’t feel my own legs
touching each other when I was lying in bed. Showering was a total nightmare as
I was extremely sensitive to water. Water, specifically hot or even warm water,
would make my hands curl right up into little fists making washing my hair was
next to impossible – and not to mention trying to hold a brush to dry it
afterwards. The whole process would take at least 2 hours. At almost exactly 8:15pm
every night I would experience a shooting pain up my spine, like someone was
driving two metal poles up from my tailbone, making sitting almost impossible.
I couldn’t sleep at all despite the cocktail of muscle relaxers and sleeping
pills I was prescribed thanks to the powerful steroids surging through my
veins.
I truly don’t know what I would have done without my
boyfriend to help me through it; driving me to appointments and forcing me to
go to the grocery store and not be embarrassed about having to walk with a
cane. Friends wanted to come over and help but I was in such a state that even
carrying on a conversation was a chore and watching TV gave me a migraine. It’s
not easy going from being an independent workaholic to relying on someone for
even menial tasks such as using a debit keypad.
I educated myself as much as possible on the role of diet
and drastically changed the way I ate and looked at food in general. I sought
out alternative medicine, such as acupuncture, massage therapy, and even yoga.
Yoga! I never thought I would see the day. It’s impossible to say how much, if
at all, this attributed to my improvement but I felt better doing it. I
distrusted the doctor’s heavy reliance on modern medicine, especially after
I’ve been hearing and reading so many accounts of women who changed their
lifestyle and now experience little or no symptoms at all. “Everything in
moderation” was the best advice my neurologist could give.
As the end of January neared, I was able to walk on my own
and slowly regained function in my hands. My left eye had little improvement;
there was a bit of light coming through and I could see shapes but most of the
detail was still greyed out. This was actually more difficult than being
totally blind since now I had one eye with perfect vision and the other with just
a tiny bit, sending a confusing message to my brain affecting my depth
perception and causing debilitating migraines. Driving was still absolutely off
the table.
One of the last symptoms to fade was what is known as the
“ms hug”. It is this sensation around your ribcage that feels like you have a
very tight belt on, almost to the point of suffocation. Apparently what it is
are the little muscles between your ribs going into spasm. It’s very
uncomfortable and was present 100% of the time since being in the hospital and
is something I still go through regularly every morning or in extreme
temperatures.
While my vision was still quite terrible come February, I
was feeling much better all around, aside from not being able to sleep at night
due to serious restless leg syndrome. I had occasional numbness in a few areas,
but generally I thought the worst was over. That was until February 6. That was
when I had my first terrifying seizure-like episode. I honestly thought I was
going to die and being so scared only exacerbated the symptoms.
I was home alone standing in the bathroom bandaging a cut on
my thumb. In an instant I felt an electrical shock crawling from my neck down
my spine and through both of my arms - this is something that's known as L'Hermitte's Sign, which I actually experienced
very lightly for several years leading up to my diagnosis through a
peculiar movements of my head or neck. This time, I couldn’t move my head at all since this made
the electrical shock ever stronger. All I could do was lie down on the bathroom
floor as my arms and hands totally seized up, my hands clamping into tight
fists once again. I was dizzy and petrified of losing consciousness and knew I
had to get help. Somehow I dragged myself across the floor to my bedroom and
very awkwardly called my friend with my hand clamped up. I needed to talk to
someone to keep me conscious because I was certain I’d die if I lost it. I was
able to get a hold of my boyfriend who was home within 15 minutes. He sat with
me not really knowing what to do either, since I couldn’t even get up to get
into his car to go to the hospital. We tried calling the MS help number I was
given, only to repeatedly get an answering machine.
After an hour and a half of being convinced I was going to
be paralyzed for life, everything slowly went back to normal until it was as if
nothing had ever happened. It occurred two more times before I got a
prescription, and only one time after taking the drugs (almost a month ago).
Unfortunately, it was while I was out for dinner with friends and had to excuse
myself from the table to go lie down on the bathroom floor until it subsided.
I haven’t been quite normal since that episode. It presented
several new symptoms that now no longer go away. I get the electrical shock
feeling in my arms regularly when previously my arms had been unaffected. It’s
much stronger in the mornings and affects my left side noticeably more than the
right. I went to Vancouver at the end of February for my birthday and got some
much needed friend time. It was a good time but it was also a wake-up call that
I just wasn’t the same. I was tired most of the time and I lamented the fact
that my days of staying up until 5am were clearly over.
Right now, March 20, 2013, it is the first day of Spring. My
left eye vision is still very bad, I periodically experience migraines, the ms
hug, shocks down my arms, and tremors down my spine when I’m out in the cold.
The vision in my right eye is beginning to suffer and I’m starting to see
tracers and spots of blurriness. But, I can walk, have no symptoms on my lower
extremities, and can write and type. My main focus right now is getting the
proper medication. Most importantly, to the best of my knowledge, my mental
capacity and speech hasn’t suffered, which is a known symptom.
You might be wondering why I’m not already taking the drugs
I need for long term prevention of relapses. Well, you can thank our utterly disappointing
healthcare system. There is a drug called Copaxone that has been proven to
reduce relapses by 30% if injected daily. The problem is that it is very
expensive (almost $2000/month), and while I have partial coverage through my
work there is a government program called Trillium to help with the remaining
amount. HOWEVER, this also has a ridiculous deductible anywhere from
$1000-$3000 based on income, which I refuse to pay, and requires a lengthy
application process. There is also a third program that helps to cover this
deductible amount, but I have to wait for approval from Trillium first. So that
is where I am. Waiting for the government to approve funding for a drug I
desperately need. I didn’t ask for this illness. I’m not expecting the government
to fund my decision to kick a heroin or other drug addiction that was my choice
to start. I swear there is more of a support system for drug addicts than there
are for people who had no choice in becoming ill, and yes, I am angry about
that. My life depends on this drug because each relapse I have is more likely
to become closer to permanent.
While I want to inform myself as much as possible, I find
reading too much about MS on the internet can be depressing. From what I’ve
researched, disability is a 100% probability and it’s very hard to not dwell on
that when I just turned 31. My life now has this giant obstacle in front of me
that is NEVER going to go away. I’m not sure I can ever go back to my job again
and I’ve had to stop drinking almost completely.
However, I’ve become much more informed about food and just
how terrible our eating habits are. I value the people around me more than ever
and realize that a lot of people care. I never thought I would appreciate being
able to walk, or write, but here I am. I’ve learned how to sleep in and how do
to things slower. I got out of a job that was suffocating me and now I’ve got
an entire summer to chill out and do things I never had the time for before –
rather, I never let myself have the time for. The only way to get through this is what
everyone has been saying to me over and over; to think
positively. I could sit at home crying everyday about what might become of me
in 10 years until it became a self-fulfilling prophecy. But eventually, you
have to stop dwelling and start living.
