Living with Uncertainty: My Path to Answers and Healing
In 2022, I noticed that my voice sometimes had a sarcastic tone, which hurt my husband. I kept telling him I wasn’t aware of how my voice sounded. At 59 years old, I thought it might be due to my aging throat, so I started doing voice exercises in the mornings. I sang scales—"do, re, mi, fa, so, la, ti, do"—and followed it up with 30 minutes of singing. Singing has been a lifelong love of mine; I sang in school and church choirs, took singing lessons, and performed as a backup singer in groups, harmonizing with friends.
Losing my voice with MG
In March 2024, after returning from a vacation in Belize, I noticed new and alarming symptoms. My voice became slurred and hoarse (it even sounded like a horse neighing—ha ha). I had difficulty breathing, choked on my water bottle, and experienced numbness in my fingers and toes. I contacted my nurse practitioner, who ordered a CT scan and an ultrasound, suspecting I might have had a mini-stroke. A couple of days later, her medical assistant called with the results: everything looked normal, and there was no sign of a stroke or anything else.
Ruling out a stroke and seeking answers
At a follow-up appointment, my nurse practitioner gave me a referral to see a neurologist and an ear, nose, and throat (ENT) specialist to investigate further. By June, I started having trouble eating certain foods. I experienced choking fits—one time, my husband had to perform the Heimlich maneuver to dislodge a piece of banana. Another time, while eating a bologna sandwich, the food piled up in the bottom front of my mouth, and I had to cough it out. Similar incidents happened with bacon, a meatball, and a slice of pizza.
Choking incidents and adjusting to soft foods
By last Monday, I found I could only eat soft foods. Monday night, the neurologist’s office called, and I had an appointment Tuesday morning. After an examination, the neurologist suspected Myasthenia Gravis based on the bloodwork requisition. However, it will take 6–8 weeks to get the results. In the meantime, I’ve been researching Myasthenia Gravis and adjusting my eating habits. Now, I stick to soft foods like Boost drinks, vegetable juice, applesauce, chocolate pudding, and bananas (taken in tiny bites and carefully swallowed). I can still eat chicken tenders but no longer steaks or pizza.
Choking incidents and adjusting to soft foods
I also sip water slowly through a straw. My voice is hoarse and nasal, making it hard to articulate clearly. Sometimes only my husband can understand me, so I often text people instead. For certain words, I’ve found it easier to speak in French. Additionally, my right fingers, palm, and arm have become numb.
A suspected diagnosis and lifestyle changes
For now, I’m focusing on resting and taking it easy. I’ve stopped lifting laundry baskets, grocery bags, and other heavy items. I’ll see my nurse practitioner in a couple of weeks for further guidance and I'm waiting for an appointment with the ENT specialist. My family and friends have been incredibly supportive with their loving words, prayers, and advice.
Support, positivity, and finding joy
These days, I lip-sync to music in the mornings and enjoy my favorite tunes for a few hours a day. I’m keeping a positive mindset about my health and taking things one day at a time. That’s my story for now, folks—Lucky Liz here from Canada.
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