Chapter 2: The Diagnosis (Part 2)
Our main character hits rock bottom when he faces the worst day of his life.
The muscle twitching had accelerated. Soon every muscle fiber in my chest and arms was flickering on and off, on and off. My speech wasn’t getting any better either. And worse, my words were slurred, even when I took off my mask. I was dropping things more often and choking on fluids if I drank too quickly. It was undeniable at this point.
I knew all signs were pointing to ALS, but on every forum I lurked, there was constant assurance from lay people that if you weren’t having “clinical weakness,” then you didn’t have ALS.
Well, to me that meant that if I could still do body weight pull-ups and bench press over 200 pounds, then I didn’t have ALS. So I continued to train myself… hard. The twitching got worse but I was getting STRONGER.
Jamie and I chalked up my medical mystery to high levels of stress and anxiety which can mimic many of my symptoms. With the pandemic constantly threatening my business, it had been an unusually stressful year. If not anxiety, then it must be another rare condition (even more rare than ALS) known as Benign Fasciculation Syndrome. That would at least explain the relentless muscle twitches with the added benefit of being non-fatal.
To be sure I wasn't in fact dying, I met with my primary care doc who, on top of a CT scan, ran every lab under the sun. Clean. No thyroid issue, no brain tumor, no stroke. At the time, I thought these were all good things.
Next step was an appointment with a neurologist but, and this is a big BUT… I had to wait 4 months to get in! A third of a year dealing with this anxiety? It was unfathomable.
Unwilling to sit around and wait, I procured the services of a chiropractor to take a literal crack at my growing list of issues. And that’s when things got weird. When she got to the part of the evaluation where she tested my reflexes, my left leg nearly jerked us both off the table. This same brisk response did NOT occur on my right side. Now, I’m no medical doctor, but I knew that wasn’t good.
Immediately afterwards, in the parking lot, I consulted Dr. Google once again to self diagnose. Hyperflexia (especially if only on one side) is a clear cut sign of upper motor neuron disease. And in that category of neurological horror you’ll find, drumroll please…
Amyotrophic lateral sclerosis. A. L. S.
I had my first ever panic attack right then and there and shortly after, at my wife’s urging, found myself in the ER that night.
From there, things moved quickly (for which I’m grateful because that is quite uncommon). I was in a neurologists office the next day. She suspected ALS and referred me to a neuromuscular specialist.
I remember still being hopeful (somehow) that I had something else before that final specialist visit. After all, I was getting stronger in the gym. “People with ALS can’t even walk or lift their arms,” I recalled from the forums.
After a final two day wait, my wife and I finally set out for the ALS clinic at KU to get an answer once and for all. Jamie wasn’t in denial at this point. She knew, but she played along anyway and let me hold on to the hope that remained. I honestly thought it was going to be one of the best days of my life. The day I found out, I’m not going to die.
The doctor gave me a physical exam first. I tried small talk to get a sense of how the tests were going. He wasn’t having that. He instructed me to let him finish. I probably should have known then. Then he administered an EMG. This is the holy grail for testing for lower motor neuron disease. It’s the combination of both upper and lower motor neuron disease that leads to an official ALS diagnosis.
Jamie and I sat together while he finished his reporting. I was watching his body language, looking for clues. He slowly turned to us, pulled his chair in close and spoke.
“I know this is hard...”
And that’s all I heard before blacking out.
I would later find out that my tongue had atrophied A LOT. The weakness I was neglecting was far more insidious than I had realized. In ALS, for the majority of persons afflicted, symptoms first present in the upper or lower limbs. But my diagnosis is Bulbar Onset ALS, meaning it started with the muscles of my throat, mouth and face. Turns out you CAN have strong arms and legs with ALS. For awhile.