What’s Wrong With Me! The Final Episode.

~ Ellie

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.

MS lesions in brain
A brain showing the tell-tale white spots that are MS lesions. Not mine, but a lot like mine.
Photo (cc) by Waglione

“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.

Epilogue

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.

19 thoughts on “What’s Wrong With Me! The Final Episode.”

  3. Well, that was an epic series of posts, Ellie! I’m glad that you were treated by a caring and compassionate doctor in the end. That must have made things so much easier after all the uncertainty you’d been through beforehand. It’s even better that the treatment worked so well. I’ve always loved stories with a happy ending. 😀

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    1. Thanks Bun! Yes, Dr. Antel was the ‘pot of gold’ at the end of the ‘rainbow’! Heh. The uncertainty, the ‘not knowing,’ is always the worst, I think. BTW, I printed out all the ‘episodes’ and stapled them together like a small book; I gave them to Dr. Antel on my last yearly visit. 🙂

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  4. Pingback: MS Anniversary – 20 years | Crossed Eyes and Dotted Tees

  6. I think you are an amazing woman and a brave survivor. I understand illness and the frustration with the heslth care system. We survivors have incredible stories to tell. Thank you for sharing, stay well, and g-d bless

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  7. Ellie, wow! I am so glad your condition never worsened. You are not blessed to have the disease, but are for it not to have gotten worse, as you know. So happy to hear a “happy” ending. Your triumphant tone reminds me of the texting conversation I had with my hair stylist last night. She’s the age of my son and has had so many illnesses since I’ve met her several years ago. She (and I) always suspected there was a big one behind it all, but she couldn’t get a diagnosis and I’ve listened to her medical problems all this time, wondering WHEN. She finally had THE appointment. She has lupus, and maybe one or two other auto-immune illnesses also. She was also triumphant, and I in a weird way congratulated her on finally getting a diagnosis. She said, “you get it,” because most of her family and friends were acting like it was her funeral although I suspect they had previously thought she was a hypochondriac, but I understand what it is like to need that diagnosis and to finally get it. Now she will probably get overwhelmed and grieve, but that first reaction is FINALLY and I WAS RIGHT ALL ALONG.

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    1. EXACTLY!!! 😀 It’s called ‘vindication,’ and I think it was the most outstanding example of it in my entire life!
      But yes, I sure lucked out!!!
      Lupus is so hard to diagnose, from what I’ve read. It’s difficult when symptoms are all over the effing map! Doctors must stay au courant with the latest and best research, they’ve gotta keep up. My first neuro was from the dark ages, unfortunately. Anyway, the luck of the draw, I say! (Not least of which is being a Canadian with our free health care!!) Thanks for your understanding, Luanne!! xoxo

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  8. Pingback: A Pointed Anniversary | Crossed Eyes and Dotted Tees

  9. Hi Ellie

    My dear friend Linda Schaub guided me to your site. What a awesome introduction to you and MS. You are a Lucky 🍀 🦆 Duck — my favorite people. What do you think catapulted your health to a state wherein you didn’t need treatment? Any tried and true suggestions??

    MS Lucky Duck
    Jennifer

    Liked by 3 people

    Reply

    1. Hi Jennifer! Yes, she mentioned you in an email. I can only say that I was very lucky in how mild my case was. It was nothing I did or didn’t do, truly. Just luck.

      And a great doctor. You need a good doctor and you need to trust her/him. And don’t be shy to ask her/him a LOT of questions. About treatment, anything.

      Also, for info, I used to go online a lot – but to official sites like the Montreal Neurological Institute, or Massachusetts Gen. In other words, stick with recognized institutions. None of the fringe crapola that’s out there. For Canada, the best source is the MS Society. In the US there must be something similar. xoxo

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