Kentucky doctor shares personal experience with MS
BEREA, Ky. — March is multiple sclerosis month and, for one central Kentucky doctor who knows the disease far too well, it’s a month she holds dear.
Dr. Landi Cranstoun, a physician in Berea said she first learned about multiple sclerosis, or MS, from her mother who was diagnosed with the disease when Cranstoun was very young.
“She woke up one morning and was completely blind,” Cranstoun said of her mother’s first experience with the symptoms of MS. “She was terrified and had no idea what was going on.”
Cranstoun said, back then, MS was not as well-known to physicians and it took many months, several tests and hospital visits to pin down the cause of her mother’s blindness.
While MS is more widely-known, the cause of the auto-immune disease that affects more than 2.5 million people worldwide is still unknown, according to Cranstoun.
“Researchers are still working to determine the exact cause,” she said. “Many think it could possibly be genetic, but we haven’t been able to isolate any particular gene.”
Vitamin D deficiencies, salt intake and viral infections have also been researched as causes of MS.
One thing is certain: MS occurs predominately earlier in life. According to the National MS Society, most people with MS are diagnosed between the ages of 20 and 50. The average age of MS diagnosis is 30 — almost the age of Cranstoun’s mother when she was diagnosed.
Women are also twice as likely as men to develop MS, the doctor added.
According to Cranstoun, MS is a disease that causes demyelination — a kind of damage — to the brain and spinal cord nerve cells. The damage effectively cuts off communication between a person brain and nerves.
“Think of myelin as insulation. You have insulation around electrical wires around your house to protect the wires. Myelin acts as insulation for nerve fibers. As the myelin wears down, the nerve sheath is injured and basically shorts out,” she explained.
This “shorting out” manifests in different ways and causes many different symptoms, including vision loss, pain, fatigue and impaired coordination.
To make matters more difficult, Cranstoun explained, MS affects everyone differently and doctors still don’t know why.
“Symptoms, the severity of the disease and the duration of the episodes of paralysis can vary from patient-to-patient,” Cranstoun said. “Some patients, like my mom, whose MS was a very mild case can go years without having any episodes or symptoms. However, others with more severe MS or those who haven’t sought treatment or diagnosis of the disease can often be paralyzed indefinitely and confined to a wheelchair.”
Besides the physical pain of MS, Cranstoun said another battle patients with the disease must fight is psychological. Cranstoun said she watched her mother struggle to maintain employment because it was hard to predict when she would be physically able to work. The doctor said MS is isolating in that way that it removes you from social situations.
“She really had a hard time with the social isolation,” Cranstoun said. “A lot of her friends were from work, but when she couldn’t come to work for weeks or months, she kind of lost contact with them.”
Cranstoun said, now as a physician, she treats patients with MS who suffer from a loss of identity and feel socially isolated.
“It is especially hard for people who are active. They play tennis, for instance, and they play every week with their friends. Then suddenly, they lose the use of their legs and they can’t play tennis,” she said.
Another hardship patients with MS face is that most of the time patients look completely healthy.
“A lot of my mom’s friends and sometimes her bosses would doubt her diagnosis,” Cranstoun explained. “It’s kind of hidden inside you, people don’t know what you are feeling.”
Cranstoun said, unbeknownst to some, most people probably know someone with MS. She said sometimes for her patients with MS, the anxiety, depression and isolation, seems almost worse than the disease itself.
“I had one patient that put her entire life on hold because she was afraid of what might happen. She never got married, or had children because she was scared she would become a burden to her family,” Cranstoun said. “As a physician, we screen and watch for signs of depression. That’s one of the greatest tragedies of this disease. Not only do you have a disease you are fighting against, now you are alone.”
Cranstoun said she encourages family and friends of patients with MS to reach out and continue to involve the patients in their lives. She said storytelling around MS is very important, which is why she shares her personal story of her mother’s struggles with MS.
Cranstoun said understanding and compassion can go a long way in making MS patient’s quality of life much better.
“I would encourage people to reach out to those with MS. Let them know that you miss them at work, school or on the tennis courts,” Cranstoun said. “Ask them if there is any other way you can continue your friendship with them. You might not be able to play tennis, but there are other activities you could share.”
Barker writes for the Richmond, Kentucky Register.