By Angela March 4, 2011
At this point I urge you to click the link provided here http://mssociety.ca/en/information/symptoms_manage.htm in order to increase your understanding of the symptoms I experienced at this early stage of my diagnosis. Of the 25 symptoms listed on the page I was experiencing 14 of them by the end of this chapter. Also, I have to tell you, how therapeutic yet very painful it was to re-trace the events that led, ultimately, to my definitive diagnosis. The following chapters will be choppy, raw and blunt. That is how it seemed to me, to us, as we lived it. On top of the memory and cognitive impairments I suffered at these early stages, I think that the stress and shear shock of the events that happened encouraged a self-defence mechanism, which was to block out this terrifying and traumatic period in my life. I’ll be honest and say that some, if not most, of my memories have been manufactured and sewn together by the testimonials of those around us at the time. However, saying that, forcing myself to remember has created a sense of ownership of these memories I never felt before now.
We called my parents and told them what was happening. They immediately got in their car and drove the 2 hours to be at our side. Dad stayed with Grace while my mum and Steve and I went to the hospital. Still thinking we were dealing with a bad drug interaction or some crazy side effect, we were pretty easy-going about the whole thing. Having to go to the Emergency Room was more of an inconvenience than anything.
It’s simply amazing how at that moment we were completely oblivious to what was about to happen.
After checking in to the Emergency Room we were told to have a seat and wait to be called. I remember checking the time. 3:00pm. We waited. And waited. And waited. And waited. When we were finally called it was around 9:00pm.
A doctor came in, did some generic neurological tests, for instance, touch my finger to the Dr’s finger to my nose to his finger etc, stand on one foot, recite the day, time and explain where we are. A nurse drew some blood. I was asked a few more questions about my sight. A drug interaction was immediately ruled out. A CAT scan was ordered. We waited.
Results of the scan came back showing something but they couldn’t be definitive at this point.
We were told it would probably be one of 2 things: Lymphoma or Multiple Sclerosis.
But the doctor couldn’t diagnose at this point. A neurologist would be able to give us more definitive answers. We would need to wait for the on-call neurologist. He wouldn’t be there until the morning. The time at this point, is midnight. They told us we could stay and be first on the list to be seen in the morning or go home and come back and risk not being seen at all. Good god. So Steve took my mum home. I hunkered down, in some small room off the main room of the Emergency dept.
Steve came back through the wee hours of the day and we waited together for what was to come.
At around 10:00am the on-call neurologist came in. Hard to tell by his face, but obviously this is not going to be good.
We heard the word Lymphoma again.
Lymphoma. Lymphoma. Lymphoma.
That’s cancer. Cancer. Cancer in my brain. Oh. My. God.
But it could also be Multiple Sclerosis.
Ok. That’s ,ok. We can handle that. That’s pretty benign isn’t it?
All I saw was wheelchairs. Thousands of wheelchairs rolling around in my mind. Because, that’s all I knew about MS. I didn’t know what it actually was. Didn’t know what it could do. Nothing. I didn’t know anything.
The Dr. wanted to review the scan one more time and arrange for a referral to see a neurological specialist. At 1:00pm (22 hours after our arrival) he came back, gave us the referral information and sent us on our way.
We somehow managed to get to the car.
Stunned. So stunned.
I looked over at the driver’s side and saw that Steve had tears rolling down his cheeks. Oh, god, no. This, this, this can’t be happening. Brain cancer? Is this some kind of joke? He can’t lose two people to brain cancer. (His father passed away from brain cancer in 2001)
But it could be Multiple Sclerosis.
We held each other and cried. I remember begging myself to wake up from this nightmare.
WAKE UP. WAKE UP, GOD DAMN IT! WAKE UP!
At that point I said to myself that I better pull myself together. Buck up soldier. You can’t win this war, if you can’t fight the first battle.
Steve started the car and we went home.
We saw the neurologist we had been referred to three days later. It was a Wednesday.
Lymphoma or Multiple Sclerosis.
He feels very confident it is MS, but to be sure, orders an MRI.
We go home. And wait.
Steve’s mom flew in from Ontario to be with us and to help. I was told not to drive due to the optic neuritis I was experiencing.
The MRI was scheduled for the next week. It was my first, of many to come. It was weird. It was loud.
But I was still stunned.
I walked around in a complete daze, a daze helped along by the optic neuritis and the cognitive confusion. It is around this time that my short term memory starts to disappear.
Which is very frustrating. I get a bit swear-y because of it.
We get a call from the neurologist’s office to inform us that the wrong type of MRI was ordered. I was supposed to have had a scan that included contrast dye. A dye that would show if the lesion/tumour was inflamed and would also give a baseline for comparison to future scans. They apologized for the inconvenience and told us they would call with another appointment.
I remember the weather was warm. It was beautiful out. Windows were open. It was going to be an early spring. I remember wondering if this was the year my lilacs would bloom.
One day, my mother in law drove me to the mall. I needed to get out. I hadn’t talked to anyone on the phone in days because I was so confused and words were still not coming out the way I wanted them to. I couldn’t type or communicate on Facebook because I couldn’t read and my hands were not working together.
At the mall I got confused with the escalator and almost started to cry. I didn’t let on. I found the whole experience overwhelmingly stimulating and needed to leave.
I did, however, buy 3 shirts.
We proceeded to get ready to celebrate Easter. Nanny and Grampy left their house at 5am to drive the 2 hours to be in our drive way to hide eggs before Grace got up. The egg hunt was a huge hit. I was still stunned.
I remember being frustrated that I couldn’t see, speak properly or read. I had just started a new book and couldn’t even make out the words on the pages.
I remember being constantly confused. Wobbly and confused.
My mother in law flew home the Tuesday following Easter.
The MRI was scheduled for the Friday.
Steve took the day off work. The MRI was early but took forever getting the line in my arm to administer the contrast. And by forever, I mean they had to get an ultrasound technician to find a vein. But not before, at least 5 nurses and one doctor tried. It was a blood bath. My hospital gown was covered in blood. They kept making jokes that I have blood but no veins. Ha. Ha. So not funny. So not funny. How can you @$$ holes make jokes while my life falls apart?
The hospital is right around the corner from my office so we popped in so I could say hi to my students. They had sent me flowers and I wanted to thank them. Steve and I went for lunch and then went home.
At 4pm the phone rang. Steve answered.
“Please tell your wife she has MS and to be at the MS clinic for her first round of steroids at 9am on Monday.”
I am so not kidding. That’s how they did it.
Ok. So, I have MS. Ok. Not cancer. That’s good.
On Sunday, it was another beautiful day, so, we took Grace to the park. I was having trouble walking. It was like the ground was made up of thousands of peaks and valleys and I was stepping up for the peaks and down for the valleys. I must have looked completely insane.
I slept all afternoon.
Once Grace went to bed that night, I started to put some activities together that she and my mum could do during the week. Mum and dad were going to come up and help me with Grace (and I think to keep me from falling apart). They were going to be arriving in the morning.
I bent down to pick up something and fell over. Just fell over. No warning, just down on the ground.
When I got up, I went out for a smoke.
When I tried to get back into the house, my mind and legs couldn’t register how to manoeuvre the stairs. I’d lift a leg but it would just fall back down without progressing up the steps. I called for Steve to help.
This is it. This is what MS is then.
Steve wanted me to go upstairs to lie down in bed. I could barely move my legs. He was supporting me from under my arms and the pain, oh the pain, was unbearable. Like a thousand tiny knives digging into my flesh. For those of you that can remember the pain of child birth, this was, much, much worse. The slightest touch was agonizing. He couldn’t touch me, I screamed in pain.
Eventually he got me into bed. Eventually I fell asleep. Only after I lost feeling in my left hand.
Then, I had to pee.
All feeling in, all awareness of, my left leg, left side of my body, was gone.
Steve literally had to drag me to the washroom, while I screamed in pain, and no sooner was I back in bed and I had to go again. This went on for 3 or 4 times before we said enough was enough.
It was 2:00am.
We needed help.
Mum and dad wouldn’t be here until late morning. We couldn’t wait that long. Steve called them. They left. We called our neighbour Lenna. We were going to the hospital, but it was the middle of the night. I did not want to bring Grace. My neighbour came in her jammies, scared out of her mind, to sit with Grace until my parents arrived.
We figured it would be best to call an ambulance.
Please, no sirens, my little girl is sleeping.