SMA Takes a Normal Day and Turns It Upside Down

It’s a normal day. Well, mostly a normal day.

My parents come into my room at about 4 a.m. to tell my sister and I that they love us and that they’re heading out. They have a three-hour drive to the airport, and then an hour flight. Their first flight.

In three hours, my healthcare assistant will arrive. We say goodbye, lock the doors, and go back to sleep.

It’s a normal day, until it isn’t.

I plan to edit my book while my parents are gone. But some of my tech goes to crap. I am already tired and frustrated. Noon rolls around and, just like that, my hand drops. I manage to shut down the computer before my limp hand messes something up.

I can’t lift it. I can’t move my fingers. Must have overdone it. I go to the bathroom, because it’s time to change position. My fingertips feel like pins and needles. I am numb under the nails and along the pads of the fingers. Its OK, it’ll be fine.

I can’t do anything for the rest of the day.

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The next day is worse — my arm still doesn’t work. I can’t tense it. It hangs dead at my side. On my right side, from my shoulder to my toes, the skin is numb. Sharp pinching at the back of my right hip and radiating pain along my left shoulder make me nauseous.

This is not normal. Dread settles a sticky thick ball in the back of my throat. Do I need to go to the hospital?

I call my mom.

“Is your speech slurred?”

“No.”

“Maybe a pinched nerve? Maybe the SMA is getting worse? Do you need me to come home early?”

“No. I’ll be fine. I’ll keep you updated.”

I take medications and try to figure it out. Muscle relaxants don’t do anything, other than make me sleep. Tylenol doesn’t touch it. Naproxen seems to help.

For four days, the nights are worse. Leg cramps lead to tossing and turning, dark circles under my eyes, and irritability.

I can do this. I can handle this. Pinched nerves, SMA, pulled muscle. I’m fine.

When my parents return from their trip five days later, I’m neither worse nor better. We are scheduled to go on our family vacation, but first we stop at the hospital. Better safe.

X-ray, nothing.

We’re sending you for a CT scan in the next city over.

Hours of waiting in the emergency room when we should be starting our vacay.

There’s a lot of disease in the top vertebrae of your spine.

What? What kind of disease?

Arthritic buildup, it’s pinching off your spinal cord.

Is there anything that you can do for it?

Not really, but we want an MRI. If we admit you, we can get you an MRI in 24 hours. Otherwise, it could take a week to get an appointment. Your choice.

I can wait a week.

No, we are admitting you.

A horrible night’s sleep and bad hospital food. Two rounds of bloodwork, two CT scans (one was a mess-up, as I was supposed to go for an MRI). And finally, finally, the MRI.

More waiting … hours of waiting.

Results. Medical jargon.

Demyelinating.

What does that mean?

You have a plaque spot on your spine that is consistent with multiple sclerosis.

Can I leave?

They let me go, and I was thrilled. I hate being in the hospital. I was tired and irritated. I wanted to eat at Olive Garden and go to the Vikings exhibit at the museum.

So we ate, we saw, we conquered.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.