He holds up his phone, where he’s already been scrolling through the results fordemyelination. Demyelinating diseases. They play a part in several chronic conditions. Neurological problems. Autoimmune diseases. What does any of this mean?
Still, no one has answered the question at the front of my mind.Am I dying or what?
Despite me half-heartedly telling my parents they don’t have to, they spend another night here with me. Those chairs donotlook comfortable.Whew.In truth, I’m not sure I could handle being here by myself,but being in a hospital, it feels like I’m not supposed to let on how scared I am.
As promised, first thing in the morning, a neurologist comes to my room. He’s got a trim beard, wire-framed glasses, and a pen tucked behind his ear. “Hello, Jackson Messina?”
“Yes,” I croak, having not spoken yet today. I clear my throat.
The doctor greets my mom and dad, then, presumably pressed for time, he gets right down to business. On a tablet, he pulls up the results from my MRI. “The images show white lesions on the brain and spinal cord.” He turns toward my parents. “This is indicative of…” He continues on, and I know this is all important to understand, but I space out, unable to compute the magnitude of the information.Lesions on my brain and spinal cord?
I tune back in to catch the most important part: the diagnosis.
“Multiple sclerosis,” the neurologist says.
The type of thing that happens to other people. The type of people my parents’ charities raise money for. MS…It might’ve even been the disease Amber High’s 5K was supporting. Never in my wildest imagination did I ever think something like that could happen to me.
My mom takes notes, which I’ll need to consult later, as the neurologist continues. “We’ll schedule a regular neurology appointment to do a full diagnostic workup and go over what options are available to you.”
“Um,” I say, voice shaking, “what exactly is happening?”
“Your immune system is targeting your nerves. It thinks the coating around them is something that needs to be destroyed, which results in damage that interferes with the communication between your brain and your body. The impact of this disease varies greatly from person to person because different nerves can be damaged. Does that make sense?”
I nod, but I don’t understand it at all.What does any of this mean for me?
Does the dizziness go away? Will I regain feeling in my body?
Does it get better? Or will it all get a lot worse?
“While the disease can continually advance, usually it does the most progressing during periods of relapse,” the neurologist explains. “Treatment would function as a means to hopefully have fewer relapses.”
“Okay.” I still don’t fully understand.
“Fortunately, the more we learn about MS, the earlier we’re able to discern and make this diagnosis, which hopefully bodes well for patients in the long term.”
I guess that’s what I just went through. “Will it, I don’t know, go away, then?”
The neurologist pauses before saying gently, “At this time, there’s still no cure.”
Huh.This is it.
Mom shifts in her chair, taking a long, deep breath. “Will he be paralyzed?”
At the same time, Dad throws in a heavy-hitting question of his own. “Will this impact Jackson’s life expectancy?”
We’re really getting to the meat of it. I guess they’ve heard of people with this disease before. Maybe it’s better that I’m in the dark here.
“It’s certainly not what it used to be. With the new treatments available, we can keep this disease at bay, doing our best to prevent loss of functionality. Like I said, we’ll get you set up with an appointment at our MS center, where we’ll do a full examination and go over treatment options with you in greater depth.”
“What can we do about it now?” I speak up for the first time.
“Now, Jackson,” he says, giving a small smile, “if you want, we can tackle your active lesions with a course of IV steroids. That shouldhelp you feel better sooner rather than having to wait for your current symptoms to run their course.”
“And that’s different from the treatments you mentioned?” my mom asks, still scribbling frantically. The neurologist rattles off the long scientific names for a bunch of treatment options. Eyes wide, Mom catches the administration of each. “So basically pills, injection, or infusion?”
“Yes, there are now a lot of disease-modifying therapies—DMTs—to choose from.”
“What are the side effects?” Mom presses, while Dad gives me a half grin that’s likely meant to be encouraging.
