Dr. Brain

The first real clue about my illness came from the sleep study, not the MRI, though it was a neurologist who told me about it.

As soon as the sleep study results were available, before I could see my family doctor, I saw Dr. Brain. When my husband and I sat down in the waiting room, I was convinced that I had Multiple Sclerosis. Turns out, I was one hundred per cent wrong.

We were lead into a small room after waiting for about twenty minutes. If you compared the layout of the room to a tennis court, the doctor’s chair was sitting on the net, and his large desk, two chairs, a sink and counter top were squished in the back court.

The neurologist tested my reflexes and tickled my feet to watch how my big toe reacted. He did some other basic physical tests that I can’t remember. Then he asked me to sit down.

Dr. Brain didn’t sit behind his desk to give me the news. He sat on a stool beside his sink and stared at my file when he told me that I absolutely did not have MS. I was stunned.

There were no lesions on my MRI. It was clean.

I started to grasp for answers, because weird things had been happening to my body for five years and I was sick of it. I asked him about my symptoms and I pointed out the similarities to MS.

He started to blow me off and I got angry. I raised my voice enough to disturb his assistants working in the next room.

I would be embarrassed about my behaviour if it hadn’t forced the doctor to look up. The tone of my voice snapped him awake. Wait, he might have thought, this is a real person.

Dr. Brain softened. When he looked up at me he showed true empathy. He, of all specialists, is used to people who have gone for years without a diagnosis and without relief. And that’s when he told me there was something odd about my sleep study results.

Focus on your heart, he said. There are too many extra beats.

Next Time I'll Bring Alexisonfire

The MRI was booked before the sleep study. I was warned that it would be loud, time-consuming and possibly make me feel claustrophobic. I was told to bring music.

The night before the test I got ready for bed by relaxing in the bath. I usually have a hard time sleeping the night before a doctor’s appointment or a test, and a warm bath does help, even though it gives me time and space to dwell on the possibility of bad results.

That night, I spent an hour deciding what music to bring. It had to be relaxing but not boring.

As I sat in the bath, thinking about MS, I listened to Foo Fighter’s acoustic album. It was perfect – calming and a little dark at the same time. It became my MRI theme music.

When I arrived at the hospital the next morning, I was absolutely positive that my mystery would soon be solved. I was convinced that I had MS and that this test would show lesions on my brain. The thought created both anxiety and peace inside of my mind and heart. It would suck, but this stage would be over soon, I assumed.

The MRI technician was in her twenties. Well, I thought she was the technician until she told me that she was the assistant. She took my CD and then showed me into the room. It was a huge white room empty except for the daunting machine, which is basically an examination table with a large tunnel at one end.

I got to keep all of my clothes on - a nice change of pace from the many other tests I had taken up to that point. Patients have to get naked too much as far as I’m concerned.

The assistant positioned me on the bed, lined my head up to the tunnel and went back to her room, where she could watch the images and control the machine. She started my CD as she told me not to move.

When the tunnel moved over my head, the machine started to make an obnoxious banging noise that was only subtly obscured by my music. (Next time I'll bring Alexisonfire.) I stayed very still during the hour-long scan, afraid even to breathe too hard in case it blurred the pictures of my brain.

To keep myself occupied, I imagined that my thoughts and feelings could light up different parts of my brain for the picture, and I went through a range of emotions from sad to angry to happy by thinking of people, places and days that made me feel one way or the other.

The songs played one after the other, getting closer to the end of the album as I regulated my movement. After staying still for a while, my body wanted to twitch and scratch itches and stretch, but I ignored it. I took three or four shallow breaths, and then allowed myself a deeper one, but never a full lung and gut breath, just in case.

I didn’t want to give anyone any reason to doubt the results. I wanted those lesions to be clear.

The worst part of any test, for me, is once it’s complete and I face the person who knows the results, but is unable to tell me what is wrong with me. Over the course of several years, every smile I saw contained to the lips, every twitch at the corner of a mouth, every gleam in an eye became a sign that the test was either negative or positive.

This test was a big one, and I wanted to know right away if I had MS or not. I tried to read her face as she handed my CD back. Is there any pity in that smile? Is she looking at somebody who may be crippled in a few years?

I couldn’t tell.

My Doctor is a Hypochondriac

So there I was, barely held together with anger, on the verge of depression, in pain and exhausted. The pills the doctor had prescribed made me numb. Literally, the top two inches of my skin was desensitized by the drugs.

It was hard to advocate for myself in that state.

But I knew without a doubt that something undiscovered was happening in my body, and it was clear that nobody was willing to push for more tests after I was banished to Fibromyalgia Town.

I was getting worse, though. Waking up in the morning was depressing. The sleeping pills I took kept me asleep, but didn’t help me get the rest I needed to feel restored. I struggled to start each day when I felt like the previous day hadn’t ended. Some days I was too tired to get out of bed.

Those days pushed me to advocate for my health. I couldn’t accept that I would just get worse and worse and worse until who knows what. Until I became disabled permanently? Until I completely lost my mind?

No. I had to do something. So I went to my family doctor and pleaded with her. Because I was convinced at the time that I had MS, I asked her to send me for an MRI.

She told me, her voice full of conviction, that I didn’t have MS. She booked an MRI to humour me. I also asked her to send me for a sleep study. I figured something was wrong there. My doctor said the study would not confirm or dispel the Fibromyalgia diagnosis, but I didn’t care, I wanted to get some sleep.

Despite my doctor’s convincing tone, I thought the MRI would show MS. I was wrong.

However, it turned out that my demand for more tests would lead us to the right diagnosis in quite a roundabout way.