Loyal readers of the previous episodes One, Two, Three, Four and Five of my medical saga will now reap the same reward I did, after waiting a very long time for the answer to my burning five-year-old question: “What’s Wrong With Me?!”
The appointment with Dr. Z. – my third neurologist in five years – had come none too soon for my liking. Here, finally, was the chance to confirm my suspicions gleaned from my late-night research on the Internet. My mother accompanied me that day, October 1, 1997, to Dr. Z.’s office at the Montreal Neurological Hospital. Here is where I’d had the MRI a month before, which would now help the doctor in my diagnosis.
By this time, just to recap, my entire left side from chest down to toes was numb. My leg felt like a log, not part of me; I couldn’t feel the ground beneath, so each step was like squelching into a quagmire. The stabbing pains in my skin around my middle meant I couldn’t stand anything touching me – I remember suffering in the back of the taxi, leaning forward so as not to have the seat-back press on me, while I held my shirt away from my skin in front. The drive seemed endless.
If ever anyone was ready to see a doc, it was me!
But this was not just any doc. The man who greeted me turned out to be the gentlest, humblest and most compassionate doctor I had ever met. Affecting sweater vests and eschewing white coats, he was down-to-earth and completely free of the all-too-common ‘god complex’ prevalent among top doctors. He was – and is – one of the most renowned MS researchers in the world, yet still seems to enjoy his clinical practice immensely.
We spoke for a little while about my symptoms, and then he put my MRI film up on the light box. The three of us – doc, mom and I – sat there gazing at it. It looked kind of like this.
“So what do you think,” I asked him, and held my breath.
He turned to me and very gently said, “Well, it’s my opinion that you have MS.”
I whipped around to my mother and blurted triumphantly, “I knew it!”
“She looked up a lot of things on the Internet,” my mother said to him, almost embarrassed, for it must’ve looked like I was happy to have MS! But I just felt so validated… and grateful, that now I’d be getting proper treatment.
The rest is a blur, punctuated by highlights…
- A week’s stay in the Neuro, beginning immediately, and getting cortico-steroids IV to battle the inflammation that was causing my symptoms.
- An LP – lumbar puncture – to confirm the diagnosis. Done by a resident teaching a student. “Um… have you done this before?” I asked with trepidation. “Oh sure! We’re a great team!” said the resident, jovially. Luckily the hospital is generous with Ativans. 😉
- Hospital food so lacklustre that my daughter and ex-husband brought me a smoked meat sandwich and fries one day, which were a-ma-zinggg!
- My son coming to see me from Vancouver, and me waking up, squinting at him groggily, saying, “I must be dreaming…”
- Tegretol for my skin pains, which later on gave way to Neurontin. Said my humble doc, “We’re not really sure how it works, but it does! We think it quiets the brain’s excitability.”
- In May, 1998, I began daily sub-cutaneous shots of Copaxone, an “immunomodulator.” (Even here, my doc treated me like a partner, someone to work with, not someone to do something to. He offered me a choice of three injectables, and I chose this one. He never tried to sway me in any direction, just told me of the possible side effects – the pros and cons of each.)
I will say it loud and say it proud: THREE CHEERS FOR DOCTOR JACK ANTEL, of the Montreal Neurological Hospital and Institute. He is, to put it mildly, one of the good guys.
I am an extremely lucky lady: my MS never progressed. It’s been 18 years since my diagnosis. I look forward to my yearly checkups with Dr. Antel. I weaned myself off my shots several years ago, since the ‘site’ reactions on my skin were becoming severe. No argument from the doc, and there was no adverse result of going off the med. I still take Neurontin but it’s a much lower dose than when I started. I have a bit of residual tingling and even numbness when I’m active. But nothing close to that awful time, all those years ago, when I wondered what in the world was wrong with me.