|be healthy | March/April 2016
'But you look so good!'
Living with multiple sclerosis
by Cathryn Sprynczynatyk
Nettie Lindvig always kept up with the boys at work. She worked in the automotive industry and was able to lift and carry 50-60 pounds.
Recently, she applied for social security disability benefits, and the lifting test was to pick up a few stapled pieces of paper and turn them over.
Twelve years ago, Lindvig was diagnosed with multiple sclerosis, a disease of the nervous system.
Lindvig uses an electrical analogy to describe the disease: Think of an electrical wire with a plastic coating on the outside to protect wires from touching each other. The plastic coating is like the myelin that surrounds nerves.
"It's an auto-immune disease; and for some reason, your body thinks the myelin is foreign and attacks it," Lindvig says.
Nerves are exposed and damaged and can result in weakness and numbness. The symptoms can be as manageable as tingling or as debilitating as the inability to walk and can change day-to-day.
The first symptom of multiple sclerosis was a tingling down the back of Lindvig's legs.
"I had a job that was very physically demanding when I started having trouble with my legs," Lindvig says. "I would go to get into my car, and I couldn't lift my leg. I could go up, say, 'Move,' and it would do absolutely nothing."
Initially, the doctor thought it was a pinched nerve.
Then one day on break at work, Lindvig says she felt something like a spider web on her face, and she brushed it away. By the end of the day, the left side of her face was completely numb.
Following an MRI, she was told, "There's a possibility of MS, and there's a possibility of a brain tumor."
It wasn't until a few months later with a test of the spinal fluid that Lindvig got the conclusive diagnosis of multiple sclerosis.
"It's a very frustrating process," Lindvig says. "A lot of people go through a lot more than I did to finally get that diagnoses. For me, I was relieved to finally find out what it was and to find out I wasn't a hypochondriac and that it wasn't cancer."
Over 8 months of doctors trying to find a diagnosis, Lindvig had gone from a size 12 to a size 2 and had lost considerable muscle mass. After being diagnosed with MS and starting medication, Lindvig started to put on weight again.
Lindvig says she is always dealing with some measure of numbness on her left side. Tiredness and stress exacerbate her symptoms. Two years ago she had to quit working full-time.
These days, Lindvig says she can carry 10-20 pounds at a time, but she has to limit that due to the possibility of back spasms.
"If I carry groceries in, that's okay, but I can't do that all day," Lindvig says. "I can't do that very long anymore. Some days are worse than others."
She says one time she could tell her back was on the possibility of spasming while she was making supper. Moving the crockpot from one counter to the other triggered a spasm. Lindvig says she immediately had to grab the counter and call to her husband for help.
"People say, 'But you look so good,'" Lindvig says, "but what they don't understand what's going on inside."
When Lindvig and her husband go to the grocery store, he holds her hand to steady her. Even if she is only buying a few groceries, Lindvig says she always takes a cart to help keep her from falling.
Lindvig says she always has to remind herself to pick up her weak left foot.
"When you're walking, most people don't ever think about it -- they just walk," Lindvig says. "When you have MS, you have to think about walking. It's no longer automatic. You're constantly looking at the ground. Any change in the sidewalk can make you trip and fall.
"If you do catch your foot on something, most people can make that corrective step and they're fine. With MS your reflexes aren't quick enough. You just fall."
When Lindvig gets overtired, she says it feels like she has a sack of potatoes strapped to each leg.
"It's such a weird, unpredictable disease, and that's the scary part," Lindvig says. "I can be fine today, but I can wake up tomorrow... and not be able to use my legs."
Lindvig says that just because someone looks good doesn't mean they are doing well.
"Sometimes you see someone park in a handicapped space and walk into the store; that doesn't mean they're healthy," Lindvig says. "With MS, the further I walk, the weaker I get."
Lindvig says she considers herself fortunate. After she was able to get her symptoms under better control, she returned to work part-time in "an absolute low-stress job." She says her employer, Factory Motor Parts, is flexible giving her time-off for doctor appointments or when she is getting too tired.
"I'd like to general public to be more informed, more educated about MS," Lindvig says, "getting the understating out there of why 'You look so good' doesn't always mean that we're doing that good."
Walk MS 2016
Date: April 30
9 a.m. -- Registration
11 a.m. -- Walk begins
Location: Elks Lodge, Bismarck
Length: 3.2 miles Participants can opt for a shorter walk based on ability.
March is National Multiple Sclerosis Month. Be encourages all of our readers to take part in raising awareness, and joining in the Walk this year.
Cathryn Sprynczynatyk is a lifelong resident of Bismarck, a proud Ukranian and a news junkie. She is wife to Jason and mother to Sigurdor and Henrik.