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I approached the young clerk at the front desk of the emergency department, ready to state why I needed urgent medical care. It was my second attempt in two days to get admitted to a hospital, so I came prepared — or so I thought.
"My feet and hands feel tingly," I said, realizing how ridiculous I sounded. "And now I can't really walk."
I heard myself chuckle as I said it, because even though I was alarmed that my body was failing me, I understood that my condition could strike any outsider as weird. I had rushed to the ER for ... body tingles?
The woman stared at me from behind her mask. I had no wheelchair, no walker, but I gripped a chair in case I lost balance. I worried she was evaluating my mental rather than physical state.
Turns out, something was very wrong with me. Several days later, I would be wheeled out of that hospital, clutching a cane and a new diagnosis, feeling awash with gratitude for my physicians, nurses, friends and family, and carrying volumes more empathy for anyone who's ever had a severe but invisible disability.
I also had a lot more knowledge of a rare, hard-to-pronounce disorder that tricked my immune system into attacking my nerves. Until then, I had never had a serious ailment. Now I struggled to put one foot in front of the other.
How it started
I didn't think much of it when I began to feel tingles in my hands while in St. Louis. My two young sons and I had flown there for a cousin's wedding. I was well enough to join a dance train led by my 10-year-old.
But after I stepped out of bed the next morning, everything felt way off. Picture your dog trying on its winter booties on the first cold day of the year. You know that marionette prance? That's how my feet felt — like they weren't really mine. I lacked coordination and control.
Even my chest felt tight, like I was tied up in a corset. I fought fatigue from my hotel bed as I tried to reschedule my flight: There was no way I was flying back to Minnesota with my kids that day.
During my seven hours in the St. Louis ER, doctors had ruled out the most dire conditions and discharged me after concluding that I wasn't at risk of having a heart attack or stroke. While that was comforting, I was no closer to understanding why I would probably fail a roadside sobriety test. The doctor encouraged me to fly home and follow up with a primary care doctor or specialist in the Twin Cities. Knowing that could take weeks, my friends urged me to see a neurologist as soon as I landed — and the fastest path to one would involve another trip to the ER.
A privileged patient
With the help of a wheelchair and airport assistants, my kids and I finally made it back to Minnesota. From my bed at Methodist Hospital in St. Louis Park, I was fortunate to have three doctors and a pharmacist — a brother, two cousins and a friend — guiding me through texts and phone calls. When a couple of them vaguely suggested I seek out a "lumbar puncture" (also known as a spinal tap), it was because they didn't want to frighten me.
Guillain-Barre syndrome is a rare nerve problem, affecting only one or two out of every 100,000 people a year. It often is preceded by an illness, like flu or food poisoning.
The description fit. I had been trying to shake a stubborn summer cough. In patients with Guillain-Barre (pronounced ghee-YAHN bah-RAY), their immune system becomes confused and starts assaulting the sheath of the nerve cells, not just the infection, resulting in numbness or muscle weakness.
When I read about the disease online, it sounded dramatic. Recovery could take several years, yet most people could walk again within six months. Some patients became paralyzed or were placed on ventilators.
Early treatment was important to recovery. But to get it, I would need to be admitted. An ER nurse urged me to advocate for additional testing lest I be sent home again.
My brother texted me instructions on how to do that: Write down the exact timing of each of my symptoms so I could describe the progression. Explain my concern that it could be Guillain-Barre, given my recent viral illness and the fact that the numbness started in my feet and was spreading up my legs. Finally, ask for the lumbar puncture.
I followed my brother's script to a T. My ER doc, whose mind was probably already tracking in the same direction, cracked a smile. "I'm going to have to talk to the neurologist about that," he said in reference to the spinal tap.
The doctor tapped my knees with his reflex hammer. Nothing happened. What followed was the best possible care that likely made all the difference with my recovery.
Treatment starts early
I got the tap. And even though my spinal fluid didn't show signs of Guillain-Barre, I was admitted and started an intravenous treatment containing antibodies that would hopefully stop the nerve damage. I met an onslaught of doctors, including a kind neurologist who explained that we still needed to check for things like for multiple sclerosis.
"Stop googling!" teased my nurse, Joe, sensing that my medical doomscrolling wasn't good for my mental health.
And when I was alone with my thoughts inside the MRI tube, I teared up thinking about the absurd rapidity with which my symptoms worsened and how much was still uncertain. The idea of losing my mobility — and so many things that I associated with my very identity — sank in. What started with pickleball FOMO grew to a sense of dread that I might not be able to dance with my sons at their weddings.
Thankfully, the MRI didn't detect any signs of MS. My doctors and nurses felt even more confident that I had Guillain-Barre. They said the IV therapy, pumped into me over four days, would take a while to kick in. Recovery often took weeks to months, but they hoped my case was mild. A week after experiencing my first symptoms, I was allowed to finish my recovery from home.
Feeling is believing
Within days, the numbness wore off. Feeling the carpet under my feet, and even the familiar morning aches in my 45-year-old joints, made me giddy. With my feeling back, I started snapping my fingers — just because I could. I nearly laughed tears of joy when I rediscovered my knee reflexes.
Walking around the block, trips to the store, and even pickleball were soon back in my regular routine. One of the first times I hit the court, I lost four straight games to people in their 60s and 70s. In other words, I was 100% back to normal.
"You did about as well as a person could do," Dr. Lyell Jones, a professor of neurology at Mayo Clinic, told me after I shared my experience with him. "You were a phenomenal advocate for yourself. You had lots of great advice and served up your diagnosis on a platter."
While people with Guillain-Barre usually get diagnosed, sometimes it's delayed, Jones explained. It can be especially tricky for clinicians who don't come across it regularly.
"It can be nebulous," Jones said of the early symptoms. "It's vibrations and tingling, not a lot of outward manifestations. To diagnose it, you need an index of suspicion."
Complicating matters is an association between some vaccines and Guillain-Barre. The Johnson & Johnson's COVID-19 vaccine, which is no longer available in the U.S., has been linked to a slightly increased risk of contracting the disease. No such link has been established between it and the mRNA vaccines produced by Pfizer and Moderna, Jones said. Far more often, Guillain-Barre follows an illness or infection like mine.
Not everyone is as lucky as me. I am insured and had access to a smart, proactive medical team. My brief scare flooded me with compassion for people with long COVID and other conditions that aren't well understood. Their symptoms may not be obvious or easily categorized, but they still punish the person who has them. And people can spend months or years pursuing the right diagnosis and treatment that will allow them to heal.
Once doctors were able to name my disease, it gave me hope. My body was not right, and those tingles, as strange and silly as they were, told me so. I'm glad I listened.
