The Waiting Game: When the Symptoms Outpace the Answers

Barely surviving the shock, I had a heavy, wait, on my shoulders.

If you’ve ever been through the medical wringer, waiting for test results, bouncing between specialists, and trying to decipher a body that suddenly feels entirely foreign, you might know the exact kind of exhaustion I’m talking about. But recovery from the EMG just didn’t seem to be happening. Instead, I was left dealing with a whole suite of new symptoms that I could only attribute to my last two appointments.

I was considerably weaker, and my muscles kept twitching as if I was still being shocked on the table. Looking back, I think that because I was nearly three years past my very first symptom, my body was hyper-sensitive. It felt like everything was triggering a rapid decline.

And then, of course, there was the waiting.

The wait between doctor visits was taking a toll all its own. At this point, I was firmly planted in the "why me?" stage of processing it all. I knew I'd probably upgrade to the anger stage soon enough, but we’d get there later. For now, just getting through to the next day was an exhausting project in and of itself.

My daily rhythm had turned into a cruel cycle: I’d be good for a few hours, and then I’d crash and have to lay down for an hour. Rinse and repeat. I wasn't even depressed yet, mostly because I was still entirely confused. I was still waiting for clarity. At that point, I didn't know I had ALS. Honestly, I didn't even really know what ALS was. But at home, my family and I had started having quiet, serious conversations. We began thinking it wasn’t the MS we had previously assumed it was. Way too much was happening at way too fast of a rate.

The Medical Merry-Go-Round

It wasn’t like the doctors were offering any treatments, explanations, or real solutions to what was happening to me. None of it seemed to make sense. In fact, I felt worse every single time I left an appointment.

As I mentioned, I was nearly three years past my first symptom, but every procedure now seemed to trigger a steeper, more rapid decline. All of this was crystal clear in my head. It was like having a meal that violently disagreed with you, and then someone forcing you to keep eating that exact same meal over and over again.

Now, this is where my story might differ a bit from yours. My health insurance at the time had a notoriously high deductible, and the healthcare staff definitely made the most of each appointment for me. To be fair, the staff was genuinely nice at every facility I visited. But due to my out-of-pocket costs, they certainly didn’t try to pad my schedule with unnecessary follow-ups. Every visit hit the wallet hard, so it had to count.

Decoding the Unknown

I had all the results from the MRI and the EMG sitting in front of me, but I didn’t know how to decipher a single word of it. It’s a helpless feeling, staring at medical jargon that might as well be written in ancient hieroglyphics.

So, it was back to the Physician’s Assistant to get some answers, or so I thought. I also had a neurologist follow-up officially scheduled for right after the holiday.

Maybe I should mention the backdrop to all of this: my wife is eight months pregnant.

And my big appointment? It was scheduled for December, just two days after my wife’s birthday.

There was no real time to mentally prep for what was coming, mostly because every single day was already full-time prep just to get through to the next. But time marches on whether you're ready or not. And then, suddenly, it was that day. The day of the appointment to finally, once and for all, know something.

To find out what was really waiting for me behind that door...