Known for her tireless work ethic, none of the supervisors were surprised when Katelyn Prinzing volunteered to work back to back weekend double shifts and yet another Sunday shift last October at a West End pizza parlor.
The 21-year-old college student had pulled double shifts before at Old Chicago Pizza and Taproom and was undaunted. But, this time was different.
She experienced 20 to 30 spasms daily on the right side of her body. She was shaking and experiencing numbness. Parts of her body were tightening and clenching.
Three days later, she was diagnosed with multiple sclerosis, a chronic neurological disease that affects the central nervous system. It can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness and more. These problems may be permanent or may come and go.
More than 2.3 million people are affected by MS worldwide.
“I was freaking out, crying,” Prinzing said. “But I’ll never forget, Dr. Murray looked at me and said, ‘Katelyn, this is not a life-ending diagnosis; it is a life-changing diagnosis.’ “
Twenty years ago, a patient diagnosed with MS was sure to be in a wheelchair, sometimes within a year of diagnosis. That is no longer the case.
Less than six months after her diagnosis, she is busy planning the rest of her life, which includes marriage, children and skiing.
“It affects my life but it doesn’t define me,” she said. “I’m not going to sit in bed and cry about it.”
Prinzing, who is studying elementary education at Montana State University-Billings, is the 21st century’s face of MS, a disease that comes with more hope for a normal life than ever before.
Most people with MS have a normal or near-normal life expectancy. In rare cases, complications of MS can shorten life – though many complications are preventable or manageable. Very rare instances of MS that progress rapidly from the disease’s onset can be fatal.
Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.
A rapid diagnosis is critical to getting treatment, said Dr. Ronald Murray, a neurologist at Billings Clinic who specializes in MS.
“A car with a couple of dents in the front end is much easier to repair than a car that has been totaled,” Murray said. “Treating earlier is keeping things to an absolute minimum.”
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Patients today are taking advantage of what many patients in the past were not able to access — research, Murray said.
The advent of new technology such as the CT scan and the MRI, coupled with new immunotherapy treatments, has revolutionized the way MS is diagnosed and treated. When Murray began working with MS patients 30 years ago, the approach was to treat the disease in its later stages. The standard approach was to use toxic treatments that may have been worse than the disease itself, Murray said.
The most exciting thing about MS research is simply how far we’ve come, said Sarah Chromy, communications manager for the Washington-based National MS Society Greater Northwest Chapter. In just two decades, MS has moved from being an untreatable disease to one where there are now 10 FDA-approved disease-modifying therapies for those with relapsing MS, the most common form of the disease.
And, more new therapies are in the pipeline.
These advances have been made possible by the international commitment of the scientific community, driven in large part by the National MS Society, which last year contributed nearly $50 million to funding 380 research projects around the world working to stop MS progression, restore function lost to MS and end MS forever, Chromy said.
“The Society funds more MS research than any other MS organization in the world, and that work is made possible by our individual donors and fundraisers – people like the folks attending, and fundraising for, events like Walk MS and Bike MS,” she said.
Today, there are nearly a dozen FDA-approved treatments available that can be tailored to an individual’s needs; each patient must agree to the treatment strategy. Treatments include infusions, injections and oral therapies.
Prinzing’s treatment is a $12,600 monthly injection for seven months. She will then use an injection treatment three times each week. Called Tysabri, the injection is considered one of the more aggressive treatments but works quickly and effectively, Murray said.
“Some people use it as a last resort, but we went to it first,” Murray said. “In Katelyn’s situation we couldn’t wait.”
He is confident that in 15 years Prinzing will be able to participate in the same activities she does today, which include hiking, skiing and floating rivers.
“I fully anticipate she will meet all of her life’s goals,” Murray said. “This is a bump in the road but I don’ think it should be more than that for Katelyn,” Murray said. “This is night and day from when I first started.”
Prinzing continues to work at Old Chicago Pizza and Taproom where customers ask for her by name, said Annette Welhaven, server manager. “Her work ethic and performance are outstanding,” Welhaven said. “I have zero concerns about her working here. She is fun-loving and outgoing.”
Though people today can expect a better future than people did 25 years ago, Murray adds a word of caution.
“That doesn’t mean our work is over.”