Jan Auger
How This All Started: My GBS Story
When one explanation took over—and speaking up changed everything.
I didn’t know what Guillain-Barré Syndrome was when this started. I just knew something wasn’t right.
I was diagnosed in August 2022—but it didn’t start there.
At first, the doctors told me my symptoms were from alcohol and sent me home.
I went back again. Same answer. But I was getting worse.
I fell and could barely get up. That’s when I went to the ER.
I stayed in the hospital for two nights, and again they told me my liver numbers were high from alcohol. In my case, they were related to what was actually going on with GBS.
But once alcohol became the explanation, it was the only one anyone seemed to hear.
What I was feeling didn’t match that.
On Sunday, they were ready to discharge me. I remember telling the doctor:
“This isn’t alcohol related. Whatever this is started in my feet and is now at my waist—I’m afraid of what happens if it reaches my heart.”
Up until that point, they were making assumptions. If you don’t clearly advocate for yourself—especially when things are confusing and scary—people will fill in the gaps with their own explanations.
She paused. She went and did some research and came back and said it was possible I had Guillain-Barré Syndrome. She asked me to stay another night to see a neurologist the next morning.
He knew right away. They started treatment that day—before the lumbar puncture even confirmed it.
Meanwhile, I was having severe pain every night—intense, unexplainable, and predictable. From what I’ve learned since, GBS can cause nerve pain that shows up at night. Not for everyone—but it did for me. At the time, no one could explain it. As my liver numbers kept rising, that assumption only got stronger.
One night, during that pain, a nurse said: “I bet you’ll think twice before having another drink.” That stayed with me.
The next day, the diagnosis was confirmed. Not long after, that same doctor came into my room and thanked me for advocating for myself.
I thanked her for believing in me. Looking back, advocating for myself changed the course of what happened next.
The hardest part wasn’t the diagnosis. It was knowing something was wrong—and not being believed.