After 10 years of signs, MS attacks Iowa State alumna

Sara Struckman

The numbness in Margie Scott’s feet started after her freshman year at Iowa State in 1985.

Then, she was a young and energetic 20-year-old. Her life was just beginning, but the numbness in her feet worried her.

“The bottoms of my feet felt like when you get a shot of Novocain,” she said.

The numbness and tingling returned several times, but Scott said her doctors had no answers, so she ignored it.

When the tingling progressed from her feet to her knees, Scott knew something was wrong.

“I noticed I was tired, and the numbness kept coming back,” she said. “I just didn’t feel right.”

For the next several years, Scott underwent several medical tests, but doctors were stumped. All the while, she carried on with her life taking care of her newborn baby and running a jewelry store — her lifelong dream.

Her doctor then sent her to a neurologist to have an MRI (Magnetic Resonance Imaging) to take a look at her brain.

“I sat in the neurologist’s office all by myself. I was 29 years old. [The doctor] told me, ‘Well, you either have [multiple sclerosis] or you have a brain tumor,'” Scott said. “I thought, ‘Please let it be a brain tumor, they can cut that out.'”

It wasn’t a brain tumor. Nearly 10 years after her first symptoms, a second opinion by a specialist in the diagnosis and treatment of MS confirmed that Scott indeed had MS.

Scott’s nerves were failing to transmit their signals to the proper muscles because the myelin cover protecting her nerves was being destroyed.

“What you’re looking at with MS is a problem with [nerves] being able to tell the muscles properly what to do,” said Kari Beth Krieger, instructor of zoology and genetics.

Nerves are composed of cell bodies which have long, finger-like projections called axons that reach out to the muscle or area that particular nerve is going to impact. The axons are protected by a coating made up of all sorts of fatty acids, called myelin, Krieger said.

“Nerves are just like the electrical wire you see as you drive along the road,” Krieger said. “If they ran [the wires] together, in just a bundle without any protection in between them, then the electricity would start short circuiting back and forth.”

The same thing can happen if the myelin protecting the axons isn’t working properly.

“The signal won’t necessarily go straight down the axon, it might jump side to side,” which affects the speed and direction of the impulses, Krieger said.

MS destroys the myelin in the central nervous system, affecting everything controlled by nerves connected to the brain and the spinal cord.

Scott’s first symptom of MS was the numbing of her feet. The numbness moved up her legs and was followed by fatigue and depression, all common MS symptoms, said Dr. Gregory Cooper, neurologist at the University of Iowa College of Medicine.

Scott said her symptoms have worsened since she was diagnosed.

“My hands have been numb, I’ve lost the hearing in my left ear and my memory isn’t what it was a year ago,” she said. “I’m having a hard time dealing with all of these new symptoms because I was just getting used to the way things were.”

Scott has what doctors call relapsing-remitting MS, the most common type. Relapsing-remitting MS affects 85 percent of patients, according to the Mayo Clinic Web site. This form is characterized by one or two exacerbations per year, followed by periods where the symptoms gradually disappear.

Each individual case is variable. Scott’s MS could change at any point, becoming benign or progressive, but she said she most likely will stay in the relapsing-remitting category.

“The fatigue is the worst,” Scott said of all her symptoms. “I’ve really got to be careful about what I do. I’m a person who likes to just go, go, go. If I do that, I pay for it.”

Scott said she was forced to sell her jewelry store after she was diagnosed. At that time, she had two young children, and her marriage was dissolving, eventually leading to a divorce.

Since there is no cure or vaccine for MS, those affected by the disease can only depend on treatments for their symptoms.

Scott gives herself an injection of a medication that is supposed to reduce exacerbations by 30 percent every day. She said she also receives an injection of steroids about every six months.

Steroids are used to decrease the inflammation of myelin. In MS, the myelin becomes inflamed, swollen and detached from the axon, and when the myelin is destroyed, “the result is a shrunken area of demyelinization called a plaque,” Krieger said.

The plaque is like a scar, a sclerosed, meaning hardened area of myelin, which no longer functions as insulation. In fact, the hardened area can become a circuit inhibitor.

Researchers know why the transmission of the nerve signal is hampered in MS. The myelin is destroyed, creating a impulse inhibitor. What researchers can’t answer is why the myelin is being destroyed. The mystery surrounding MS is what causes it.

“MS is related, in part at least, to altered immune functions,” Cooper said. “In this condition, the body’s immune system seems to attack the central nervous system, the brain and the spinal cord, causing plaques.”

Some researchers blame a virus for the destruction of myelin. The autoimmune and viral theories are sometimes combined in that “the autoimmune process would be touched off by a virus,” according to Richard Lechtenberg, author of “Multiple Sclerosis Fact Book.” Results of a study by scientists at the National Institute of Neurological Disorders and Stroke in Bethesda, Md., found that a strain of the herpes virus could be associated with MS. The Mayo Clinic Web site also acknowledges that the human herpes virus 6, the same virus that causes mouth sores, may trigger the disease.

The viral theory is favored since MS is an adult on-set disease. Since it is usually detected from the ages of 20 to 40, it is suggested that the virus is acquired during childhood and remains dormant until adulthood.

“It has long been speculated that some viral exposure as a child is important. In support of this, an individual’s geographical risk seems to be set by the age of about 13. For example, if an individual grew up in Iowa [a higher risk region] and moved to Florida, [he or she] would always carry the same relative risk of someone who remained in Iowa.

“On the other hand, someone born in Florida who moved to Iowa at the age of 5 would adopt the risk of someone who grew up in Iowa,” Cooper said.

It was once believed that MS was inherited because the disease does seem to run in families. According to the Mayo Clinic Web site, “as many as 20 percent of people with MS have at least one affected relative. However, it doesn’t appear that one gene is responsible for MS; rather multiple genes likely contribute to MS susceptibility.”

Although the National MS Society and MS researchers can’t explain it, multiple sclerosis occurs more often in the temperate climate of northern Europe, the northern United States and Canada, in people of European and especially Scandinavian ancestry. Plus, women are almost twice as likely as men to be affected by MS, according to the National MS Society.

In the case of Margie Scott, no one in her family, not even in her distant family, has or had MS. But she does fall into several high-risk areas. She’s a woman who grew up in the northern United States and is of Scandinavian ancestry.

So, MS may not be passed down from one generation to another, but a person can be genetically predisposed to be affected by the virus or the autoimmune reaction that causes MS.

MS has slowed Scott down, but it hasn’t stopped her. The numbness in her feet and legs doesn’t go away anymore, and she has a number of new symptoms she has to deal with, but she’s determined to live life to its fullest.

“Life doesn’t end when you get MS,” she said.