Friday, May 16, 2014


This is a piece I made to try to illustrate how the spasms around my ribs feel. Constant tightening, pulling, squeezing - as though I'm wearing a corset, or perhaps my sister's bra.
Medium: watercolour pencil (I love them! Paint with no clean-up) on sketchbook paper.

Please don't copy/repost without permission!

Tuesday, May 13, 2014


This one's a saga.

I have two previous MRIs that show "bright spots" that may be benign, or may be evidence of a neurological condition. Last month, mid-way through some major academic exams, I had neck pain and electric shock sensations, and went to the doctor. She referred me to a neurologist. In the days that followed (all while writing my comprehensive exams!) I lost feeling in my right arm and leg, as well as my balance. I used a cane to walk for a couple of weeks, because I was afraid I'd trip over my feet and go flying.

Now, my balance is back and the feeling is back in my arm and leg, but my legs are still super stiff. It feels like I've gone on a long run without warming up or stretching, and it's felt like that for days. Stretching sends my muscles into spasms.

I have an appointment with the UBC MS clinic in June. I'm nervous. I've been told by a previous neurologist not to worry, but it's hard not to worry. I'm trying to avoid the temptation to google the symptoms I've been having, as I don't particularly like the results google turns up.

This has been going on for a few years. I've seen a lot of neurologists, and neuro-ophthalmologists,  and all have the same opinion: that my symptoms are nonspecific, my lesions are nonspecific. The thing is, they're nonspecific, but uncomfortable, painful sometimes.

Starting from the beginning...
In 2002 I lost my vision suddenly in geography class. I was 14 years old and had just started at a new school. My grandmother had passed away that summer. I was in poor emotional shape, and even poorer at communicating my emotions. A throng of ophthalmologists and a battery of tests later, they concluded that it was stress - conversion disorder, specifically. They said it would get better on its own. The acute vision loss indeed got better, but not entirely: I had vision problems until I was 22 and a doctor finally thought to check if I was near-sighted. Previous ophthalmologists had done standard vision tests, but always after dilating my eyes, and once my eyes were dilated no lenses could help me see past the pain of bright lights. I've always been very sensitive to light. With a glasses prescription, and an appropriate tint to help my light sensitivity, I have 20/20 vision - something I hadn't dreamed of for many years - but a lingering mistrust of doctors. I will always wonder if there was something going on beyond stress in 2002, because while I'll be the first to concede that I was an emotional mess, I am skeptical that my problems were "just stress."

In 2004, a psychiatrist I saw for an assessment referred me for an MRI. I'm still not sure why he found this necessary. I was having problems with dissociation, but it just seems odd to refer a patient with a normal clinical neurological exam for an MRI after a single appointment. His report listed MS as a condition to rule out, alongside a plethora of other diagnoses that very obviously didn't fit me. I don't know if he put that on his list when he ordered the MRI or after seeing the results, which showed "nonspecific" lesions in my right parietal and right inferior frontal white matter. A precautionary test earned me and my anxious mother a trip to the MS clinic at Sick Children's Hospital. Dr. Banwell, the neurologist there, was fabulous, as were her resident and staff. Unlike the ophthalmologists I'd seen a couple of years earlier, these doctors listened to me and respected that I was not a small child and that I wanted to be informed about my health and have a chance to give my input. After doing a usual neurology exam, and noting that everything was normal, they concluded that my nonspecific lesions were quite likely benign. It does admittedly puzzle me that a teenager with no history of head trauma could have random lesions chilling out on her brain, but I trust Dr. Banwell's judgement.

Fast forward to 2009. In the intervening years I'd had a few days here and there when I had trouble walking because my legs were too stiff for me to effectively move them. I assumed it was just stress - I am prone to anxiety, to say the least. In the spring of 2009 for a few days I was extremely tired for no discernible reason, and when I bent my neck it felt like electrical currents were running down my arm. The doctors at the university health clinic were concerned because my reflexes were too brisk and my coordination was off-kilter, and referred me to a neurologist. I was studying abroad at the time, though, and due to move back to Canada before the appointment came through. I got better on my own and more or less forgot about the incident until the fall, when the same thing happened again. This was while I was recovering from swine flu, however, and I attributed my problems to that. For a couple of months in the fall, I was extremely tired and weak, had stiff muscles (mostly in my right leg, lower back, and my diaphragm) that twitched without any obvious reason, and sometimes had the same electric current feeling when I moved my head. I emailed Dr. Banwell, who sent a referral to the MS clinic at St. Mike's hospital in Toronto, where I saw Dr. O'Connor a few weeks later.

Dr. O'Connor seemed very unconcerned by my symptoms, even though I kicked him accidentally when he tested my reflexes. He ordered an MRI as a precaution, as well as evoked potentials. At my final appointment with him in summer 2010, he cheerfully told me that my MRI was unchanged from the previous one and that I had nothing to worry about. So I cheerfully left the country, and since I was feeling better by that point, forgot all about it.

Fast forward to this spring - April of 2014. In the years since 2010, through my master's degree, a gap year, and the first year and a half of my PhD, I've rested with the assumption that everything is OK, and that I just have random lesions in my brain. That's a bit weird but if it's not causing symptoms, I can live with that. In the past four years, I've had the occasional day when I've been inexplicably tired or sore, but nothing that can't be caused by grad school or working out too hard. There was one weekend when my right leg completely seized up with painful cramps that didn't go away for several days and made it hard for me to walk. I've figured that was because I was carrying my shoulder bag in an awkward way. There was also a week when the same cramping happened in my left arm, but I figured it was a repetitive strain thing from taking notes for too long, and I've since blamed my arm cramps when they recur on a particular historian who writes lengthy monographs, one of which I read for my comprehensive exams.

During my comprehensive exams, though, the spasms and pain in my right shoulder and arm were terrible. I figured it was repetitive strain, after a week of spending more time typing than sleeping. Perhaps a pulled muscle. When the electric shocks started, I figured it could be a pinched nerve. When I saw the university health clinic doctor to get a massage referral, she found that my reflexes were very brisk and was concerned about my symptoms and referred me to a neurologist. "At least I know it's not MS," I told her, given that previous doctors had assured me that it's not.

A week ago, the referral finally came through - to the MS clinic. Do not see a regular neurologist, do not pass go - go straight to the MS clinic. Damn. I asked the university clinic receptionist for a copy of my reports from the previous MS clinic appointment, which Dr. O'Connor hadn't given me when I left his care in 2010 as he felt there was no need. He'd told me that the neuro exam was completely normal, but his report says that I have 4+ reflexes in my knees, which all the reading I've done says is almost always abnormal. He also says I don't have clonus, but apparently that's what distinguishes 4+ from 3+ reflexes. A few YouTube videos have made me really wonder about that, because the shaking in my right leg looks almost exactly like the clonus videos that people have posted. More worryingly, he had told me that there was no change from my previous MRI, but the radiology report from my 2010 MRI notes bright spots in the right deep occipital lobe. The 2004 MRI makes no mention of that. So, I'm terrified. Everything is non-specific, insufficient for a diagnosis. Hopefully this new neurologist will have answers.

I'm not sure what I'm afraid of more - a diagnosis that has an uncertain but never particularly great prognosis, or another verdict that my symptoms are too nonspecific for a diagnosis and being told to just live with it for a few more years until this same problem crops up again.

Ultimately, what I want most is specificity. Either it is MS, which would be devastating but at least specific, or it's something else - in which case, I want to know what else, so that I can make it go away, rather than ignoring it and spasming and cramping for god knows how much longer.