Mary Eleanor Farrell, Washington, can still remember the day in September 1996 that she got the news that she has multiple sclerosis, or MS, an unpredictable, often disabling disease of the central nervous system that interrupts the flow of information within the brain and between the brain and body.
Farrell had been struggling for more than three decades with seemingly unrelated symptoms that would come and go — an inflammed retina that caused her to see “floaters,” tingling sensations in her arm, 75 percent hair loss in just one month, a pinpoint headache that “felt like a nail in the head,” an earache that lasted seven years . . .
Each symptom had sent her with her husband, Dr. Sam Farrell, to see doctors, often specialists, but all of them dismissed her. At least one came right out and told her she was just a spoiled doctor’s wife looking for attention before throwing her out of his office.
Farrell admits she started to wonder herself if she was crazy or maybe imagining her symptoms.
Then she began having trouble with her left knee and went to see an orthopedist. He noticed how her left leg turned in and asked more questions.
“I would sometimes start dragging my foot, but the whole time, I felt good,” Farrell recalled.
The orthopedist sent her to see a neurologist, who — like so many specialists that Farrell had seen before — was reluctant to believe anything was seriously wrong.
“This doctor said, ‘I don’t think anything is wrong, but because you’re a doctor’s wife, I’ll get you a test,’ ” Farrell recalled.
When the doctor gave her the news that she, in fact, had MS, “it all fell into place,” said Farrell.
“Even though we didn’t want the disease, at least we knew what was causing all of these mystery symptoms.”
Wanting to learn as much as she could about the condition, Farrell — who is an RN and a nurse practitioner — pulled out her husband’s copy of “Cecil Review of General Internal Medicine.”
“MS is on one page and AIDS is on the other,” she said. “With MS there’s too much immunity and with AIDS there’s too little.”
MS is thought to be an autoimmune disorder, the National MS Society notes on its website, www.nationalmssociety.org. This means the immune system incorrectly attacks the person’s healthy tissue.
There are four forms of MS and no cures for any of them, said Farrell, noting she has Primary Progressive MS, formerly called Chronic Progressive.
With all forms of MS, symptoms can include blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness and more, the MS website notes. “These problems may be permanent or may come and go.
“MS symptoms result when an immune-system attack affects myelin, the protective insulation surrounding nerve fibers of the central nervous system (the brain and spinal cord),” the website explains. “Myelin is destroyed and replaced by scars of hardened ‘sclerotic’ tissue. Some underlying nerve fibers are permanently severed. The damage appears in multiple places within the central nervous system.
“Myelin is often compared to insulating material around an electrical wire; loss of myelin interferes with the transmission of nerve signals.”
Looking back on her own symptoms, Farrell said that earache she had for seven years was the result of her MS “eating on that nerve.”
Although a cure hasn’t been found yet, “there are now FDA-approved medications that have been shown to modify or slow down the underlying course of MS,” the National MS Society notes on its webpage.
“In addition, many therapeutic and technological advances are helping people manage symptoms. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging.”
Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease, the National MS Society reports. MS affects more than 400,000 people in the United States and over 2.1 million worldwide.
Farrell adds that, like in her case, diagnosis may come after years of missed or misdiagnosis.
The way MS presents itself, as well as how fast or slow it progresses, is different for each person diagnosed, said Farrell. That’s part of why people can go undiagnosed for so long.
Also, there is no single laboratory test to prove or rule out MS, although magnetic resonance imaging (MRI) can help.
“With MS, there are no definite signs or symptoms,” she said. “It’s very ellusive. If you take 50 people with MS, no two will have the same symptoms.
“They say any time you are under stress, that can bring it on worse,” she added, noting looking back on her own symptoms that has been the case.
One of the first things Farrell learned about MS is that it doesn’t typically affect the longevity of your life, but it will affect your quality.
With no traditional treatment known for her form of MS, Farrell turned to alternative treatments, including bee venom injections or “stings,” which she did from 1997 to 2009.
“I had 15 stings every other day,” said Farrell. “It was very painful.”
She had heard of the treatment on an episode of the TV show “Unsolved Mysteries.”
Farrell, who ordered her bee venom from Canada, was part of a yearlong study of the treatment sponsored by the MS Society. For her, it worked wonders.
“It gave me energy and really seemed to help,” said Farrell, who for years had struggled with extreme fatigue — a common symptom of MS — but chalked it up to working long hours in her husband’s family medical practice.
Relapse in 2009
Farrell’s MS had been stalled for years, her symptoms holding steady.
Then in 2009 she suffered a relapse. Looking back, she believes stress brought on by a train derailment on their property likely contributed to it.
“I had no energy, just intense fatigue,” said Farrell. “And I hurt so badly all over. There were times I couldn’t even sleep because I hurt so badly.”
In 2010 Farrell began taking a medicine that puts the myelin coating back on the nerves and it has been helping.
Still, Farrell had been using a wheelchair to get around. That was partly due to her MS, but also other aspects of aging — she needed both a hip and knee replaced.
“But there was no doctor willing to do surgery on me because of my MS,” said Farrell.
The doctor she sees for her MS, a specialist, challenged her to get the surgeries and found a doctor willing to do them. Afterward, she was like a new woman.
“I woke up and felt no pain,” said Farrell, smiling. “I felt empowered.”
Today she uses only a walker to get around and hopes soon not to even need that.
Advice to Others
Farrell is quick to help and support those who are newly diagnosed with MS, always willing to share her knowledge, experience and strength with them.
She has told her story in two video programs, bothshowing the results of her bee venom treatments. As a result, Farrell has received calls from people all over the world.
Her advice to anyone diagnosed with MS or who suspects they may have it is straightforward:
1. Get educated on the disease.
“Finding out you have MS is such a shock, but the MS Society has a wonderful education program,” she said. “They would send me a packet every week on a different subject — vision; bladder and bowels; sex life; your rights at work; how to modify your home, work place, car; how to educate your family . . . ”
2. Find a doctor who is understanding and knowledgeable of MS.
Farrell has long gone to an MS specialist in St. Louis.
3. Be persistent.
“Don’t let a doctor throw you out of his office because he doesn’t believe you and don’t let him blow off your symptoms.”
4. Attend the Talk MS Group that meets in Washington. Call Anne, at 636-359-6037, for details.
Woman on the Move, Woman of Courage
Earlier this month, Farrell was honored with the Women of Courage Award at the Gateway Area Chapter of the National Multiple Sclerosis Society’s Fourth Annual Women on the Move Luncheon held Thursday, May 3, at the Ritz-Carlton, St. Louis.
Farrell was nominated for the award by ladies in her local bridge group.
Several weeks before the luncheon, a film crew came to Farrell’s home in Washington to put together a video segment that would be shown at the event.
“Award winner Mary Eleanor Farrell is a shining beacon of hope and goodwill in Washington,” the video announces. “Possessing a can-do attitude and a zany sense of humor, many in the community recognize the warm smile of the woman who seems to know everyone in town. She also happens to have MS.”
The award honored Farrell for her active lifestyle and volunteerism, despite her health condition.
“While Mary Eleanor may struggle, you won’t hear her complaining. She has too much to do,” the video says. “As a longtime volunteer and past president of the St John’s Hospital Auxiliary in Washington, she recognized a need for children who had been removed from homes in a hurry to have new clothes, a book, a toy, and a blanket to ease the transition to foster or protective care, so this dynamo was one of the three individuals instrumental in establishing the Backpacks for Kids project.
“In 2004, she received the University of Missouri’s Sinclair School of Nursing Humanitarian Award for her work on this project. She was also recognized as the Outstanding Auxiliarian by the Missouri Association of Hospital Auxiliaries for her commitment in bringing health-related programs to her community.”
The video is available on YouTube at www.youtube.com/watch?v=g2mtRkDNY7U.
Attending the Women on the Move luncheon was an uplifting experience, said Farrell.
“I never saw so many people so wrecked by MS and yet doing such a wonderful job with their lives,” she remarked. “You give ’em a cane, a crutch, a wheelchair or a walker and they’re off and they’re going.”
National Multiple Sclerosis Society
MS stops people from moving. The National MS Society exists to make sure it doesn’t.
The Society addresses the challenges of each person affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, collaborating with MS organizations around the world, and providing programs and services designed to help people with MS and their families move forward with their lives.
Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis.
Learn about your options by talking to your health care professional and contacting the National MS Society at www.nationalMSsociety.org or 1-800-344-4867.
You may also contact your local Gateway Area Chapter at www.gatewayMSsociety.org or 314-781-9020.