I was diagnosed in January 2014 with Relapsing Remitting MS at the University of British Columbia MS Clinic, Canada. Luckily, my current neurologist there is brilliant and I absolutely adore him.
However, I was misdiagnosed in 2004 by the same clinic. Here’s the background.
My first symptom with MS dates back a few decades when I played co-ed softball. After ten years of playing, one day I wasn’t able to throw the ball like I had done consistently for years. The ball would simply fall out of my hand behind my body without my feeling it, or it would go off in some crazy direction that my brain didn’t intend it to go.
It never resolved and in short order, I quit playing softball even though it was a real highlight of my summers and the social atmosphere that surrounded it. No one said, hey Jenny there’s something really wrong there, and you should see a doctor. I didn’t know enough to know this wasn’t right, plus, I was too humiliated and embarrassed by my overnight loss of capability that I slid into thin air.
A year later I had a car accident on September 11th, 2001. Yes THE 9/11. I happened to be in Toronto at the time and had a freak accident. My symptoms from that accident were primarily pain and some function loss in my arms. Eventually I had a MRI the following year which showed a lesion on my C-spine. The neuroradiologist who read the scans said, this lady needs to have a brain MRI in order to rule out demyelinating disease (MS).
It took another two years before I received an appointment with a MS neuro (2004) who reviewed my case history and the MRI. I presented at that time with no neurological deficits (duh dude, of course I didn’t as I had RRMS and was over my relapse). He declined to order a brain MRI and instead sent me home, saying I didn’t have MS.
While I was immensely relieved to hear this, it was shattering to find out years later it was a blatant misdiagnosis. The disease had been left unchecked for 10 years to have it’s way and cause permanent damage in my brain and spinal cord. If I had had that brain MRI it would have showed I had MS…and my life would be black and white different from what it is today.
I should also add that after this misdiagnosis I saw various GP’s in my home town due these insane bouts of severe, cement like fatigue and/or sensory issues such as severe full body itching, pain, lost feeling in my feet. Other times, motor pathways to my legs would randomly disappear from one day to the next. Every time I’d go in to the docs, they’d say it’s stress, or hormones, or it’s from a recent sports related injury. They’d do blood tests which all came back normal. On more than one occasion I’d say, I feel so ill that I feel like I’m dying. How could these words ever be dismissed still blows my mind.
As I wrote on my ‘about’ page, my neurological symptoms emerged with a vengeance in 2013. Along with the many, many issues I was experiencing, I had presented to the ER three times that spring/summer vomiting profusely with agonizing abdominal pain. It turned out I had partial bowel obstructions from a lack of peristalsis. Peristalsis is an autonomic function of the central nervous system, and a lack of it is caused by lesion(s) in the spinal cord.
I pushed my GP at the time, who was trying really hard to help, to send me to a neurologist as I said everything that was going wrong, was primarily from the neck down. Eventually I saw one, and received a full brain/spinal MRI by December 2013. BUT I had to wait until January before I could get in to a MS neurologist to receive the official diagnosis of MS.
In the meantime, I carried on with my life. When I got the confirmation, it was the single most devastating news in my life. At least give me a disease that I had a chance of recovering from?
Many MS organizations market MS as a disease that you ‘can manage’ or ‘live a long normal life’. There were pretty pictures of vibrant people running and biking on their websites and marketing materials. My experience with this disease is the dead opposite of those images in every way.
It boggles my mind how damaging this messaging is and how it alters mainstream society’s attitude towards this unbelievably debilitating and horrific disease. I hope in time this will change, and that the true nature of this disease will come to the forefront. I have chosen to publicly speak out to help this, and disclose what it’s really like behind closed doors.