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How Doctors Not Believing Me Almost Cost Me My Life

“It’s from too much computer use.”

“It’s the depression.”

“It’s migraines.”

“It’s alcohol abuse.”

“It’s just psychological.”

These are a few of the “diagnoses” I received on the seven visits I made to the Surrey Memorial ER in the two weeks prior to my hospitalization with Bickerstaff brainstem encephalitis (a variant of Guillain-Barré syndrome). I had no idea what was happening to me, but I knew something was terribly wrong. I could feel it!

Some background: I was an alcoholic seeking treatment, I had persistent depressive disorder and I had attempted suicide about 6 months prior. All of these things were in my hospital records, and I believe it influenced all future diagnoses.

It started with blurry double vision. After waiting for over 4 hours, I spent about 5 minutes with a doctor, who recommended I reduce my computer use. Two days later, I was back because I was experiencing dizziness and vertigo. This time “migraines” were apparently the culprit, and I was sent home again. Returning with the addition of limb weakness didn’t seem to be a concern, nor did returning with lethargy and disorientation. After enduring another round of scans and tests, they could find nothing wrong, and sent me home to “rest.”

Arriving in an ambulance because I had passed out and fallen down resulted in a diagnosis of “alcohol withdrawal” since I hadn’t had a drink in a few days. I was sent home several hours later with a prescription for benzodiazepines. On the next visit, they were as sick of seeing me as I was of being there, and I was all but told it was all in my head. Two days later, when I began to have difficulty swallowing, they were no longer polite about it. They simply pulled my husband aside and told him it was all psychological.

By then, a pre-scheduled appointment with my family doctor arrived, so we headed to her for answers, with me spitting into a napkin the whole way because I could no longer swallow even my own saliva. My doctor took one look at the symptoms and declared, “Oh my! This is definitely neurological. How did they miss this?” She immediately sent me to a neurologist at Royal Columbian Hospital, who immediately sent me to a neuro-opthamologist (I had opthamoplegia at this point). Back to the neurologist again, who became very concerned, and admitted me to the hospital right away.

The neurologist diagnosed it as Bickerstaff brainstem encephalitis (a rare variant of GBS), and intravenous immunoglobulin (IVIG) was administered to attempt to slow the disease’s progress. But it was too late. A week later, I was in a coma because of respiratory and cardiac failure.

It wasn’t until months later, when I was aware enough to discuss my condition, that it was revealed that the progress could have been slowed, perhaps even reversed, and the damage minimized if it was diagnosed sooner. This was a terrible blow. As a result of the illness, coma and subsequent 18-month hospital internment, I sustained a TBI and was left with several disabilities and dependence on an electric wheelchair. Could this have been prevented? Could I have avoided a coma? Could I have fully recovered? Not only had the government given me a vaccine that resulted in an illness that almost killed me, they also failed to provide me with the adequate care to treat it as soon as possible.

We were outraged that serious symptoms pointing to neurological distress were dismissed as psychological simply because of my history with depression, or explained away because standards tests revealed nothing. My husband tried to find a lawyer to take my case, but not even the top lawyer in the city would pursue it. The government is just too big and financially powerful to fight, and my claims too difficult to prove. All I can do now is share my experience and hope it encourages others not to allow ER doctors to dismiss their symptoms. You know your body best. If you feel something is wrong, pursue it until you get real answers. Don’t allow your psychological history to be used as a way to dismiss your concerns. It may ultimately save your life.

Getty image by gorodenkoff.