Learning to manage life with Multiple Sclerosis
We all have days where we feel tired or have strange physical sensations. For many people these are oddities that don’t occur once or twice, but happen regularly along with issues in balance, muscular coordination, slurred speech and tremors. When symptoms increase, causing partial or complete paralysis or trouble with vision, understanding, or speech, it is time to find the cause.
For 2.1 million people around the world these symptoms point to Multiple Sclerosis (MS), but a final diagnosis is often difficult and requires uncomfortable and painful procedures like a Magnetic Resonance Imaging (MRI), visual evoked potential (VEP) or spinal tap. An autoimmune disease that affects the central nervous system including the brain, optic nerves, and spinal cord, MS is confusing and often confused with other diseases.
When Tecumseh resident Diane Proctor was diagnosed in 1987 with primary progressive MS, it came five years after she began having symptoms. “The whole thing has been very very slow but steady and progressive,” Proctor said. “I’ve had time to get used to each stage.”
Lori Schultz, also from Tecumseh, was recently diagnosed. Although she had odd symptoms on and off for a while, Schultz attributed them to stress and didn’t follow up with a specialist. When Schultz suddenly lost her ability to speak in addition to several other physical changes, she thought she was having a stroke and went to the emergency room. After a barrage of tests, to rule out other possibilities, a neurologist officially diagnosed Schultz with MS.
“They caught mine early, so I’m fortunate that way,” she said.
The National Multiple Sclerosis Society states, “Most people are diagnosed between the ages of 20 and 50, although individuals as young as two and as old as 75 have developed it. MS is not considered a fatal disease as the vast majority of people with it live a normal life-span, but they may struggle to live as productively as they desire, often facing increasing limitations,” she said.
There is not a single medical test that specifically identifies MS. Symptoms often come and go, making the disease even more difficult to pinpoint.
“Everybody’s symptoms are different,” said Proctor.
Physicians must look at family history to see if there’s been a diagnosis in an immediate family member, and will order an MRI to check for lesions in the covering of the brain called myelin. Although these lesions can appear in other diseases, they are a hallmark of MS.
There are similar symptoms, but MS is unique for each patient. The good news is treatment with pharmaceuticals and complementary medical care can help avoid flare-ups and manage health issues. Unlike decades past, an MS diagnosis is not a death sentence.
“They were very positive.” Schultz said about how doctors presented her MS diagnosis. “They said you can live your life fully, you just have to adjust how you do things.”
Shultz injects the drug Copaxone every day, and will for the rest of her life. She appreciates that Copaxone will help her manage MS.
Proctor’s MS is not treatable with medication at this time. “I was diagnosed before the new drugs were available,” she said, and added the only treatment available after her diagnosis was oral and IV steroids, which came with side effects.
Medication may not always keep a relapse from occurring, so it is important to be aware of fatigue, vision problems, balance issues, difficulty with motor skills, and heightened sensitivity. “I really have to listen to my body,” said Schultz. “I notice if I’m tired or don’t eat right, that can trigger something.”
According to the NMSS, “Rehabilitation professionals focus on overall fitness and energy management, while addressing problems with accessibility and mobility, speech and swallowing, and memory and other cognitive functions.”
Many people with MS turn to yoga, acupuncture, hypnosis, meditation, herbal medication, Chinese medication, macrobiotics, and alternative treatments to complement or replace traditional health care. Management of MS is as unique as the symptoms.
Proctor has adapted her life several times over the years, first by using a cane, then a scooter, and now a battery-operated wheelchair. “I had to give up driving six or seven years ago,” she said of her biggest challenge. “I miss that independence. I could go places by myself.”
Proctor believes support from family and friends makes the difference when dealing with MS. “My husband, Roger, has been the biggest help of all,” she said. “He has been wonderful. I don’t think I’d be as good as I am without him.”
Schultz refuses to let MS run her life. Last summer following her MS diagnosis, she traveled with her family to Mackinac Island for vacation. They did activities a little more slowly, and made sure to have rest breaks and stay cool.
“I can still live my life and do all the things I did before.” said Shultz, “It’s just our new normal.”