The Unpredictability of Multiple Sclerosis

The Symptoms, the Causes & Why MS Is a Challenge to Patients & Providers Alike

Living with a multiple sclerosis (MS) diagnosis is like existing in a state of uncertainty. The course of the disease is unknown, making it crippling in more ways than one. Without warning, it steals energy, movement and cognitive ability. For some, loss of function slowly creeps up on them. For others, it happens rapidly.

MS is a chronic, unpredictable disease of the central nervous system that is thought to be an autoimmune disease, where the immune system incorrectly attacks a person’s healthy tissue.

Simply put, people with MS develop plaques on different parts of their brain and spinal cord, which affects different abilities, says Faith Saftler Savage, physical therapist and seating specialist at The Boston Home in Dorchester, Mass. For a person with MS, symptoms get worse typically because of the development of increased plaques.

“MS is not predictable because you don’t know who’s going to get more plaques and who isn’t, and you don’t know where the plaques are going to develop, and you don’t know which drugs may or may not work for that person,” Savage says.

Cues that Signal Something’s Wrong
People with MS may start to experience symptoms that closely mirror other conditions, making it hard to receive an accurate diagnosis in the initial phases of the disease. The symptoms run the gamut, but some of the more prominent ones include blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis and blindness. The disease is so individualized that symptoms vary from one person to the next. Symptoms come as the result of immune system attacks that affect myelin, the tissue that covers and protects nerves. When myelin is destroyed, it is replaced by scars of hardened sclerotic tissue, with damage appearing in multiple places within the nervous system.

“Many people with MS will experience loss of function or loss of skill, which happens slowly,” says Savage. “If medications are not working to slow down the progression of the disease, a person’s legs will eventually get weak, and they will be unable to walk safely, requiring a wheelchair for transportation.”
The changes don’t happen over night, Savage says. They slowly happen over a period of time.

The Four Courses of MS
MS patients’ progressions generally follow one of four patterns or courses:

Relapsing-Remitting MS is clearly defined attacks (relapses) of worsening neurologic function. Complete or partial recovery periods follow the attacks, often referred to as relapses, flare-ups or exacerbations in which no disease progression occurs. Approximately 85 percent of people with MS are diagnosed as relapsing-remitting.

Primary Progressive MS is characterized by slowly worsening neurologic function from the beginning with no distinct relapses or remissions. Approximately 10 percent of people as diagnosed with primary-progressive.

Secondary-Progressive MS follows the initial period of relapsing–remitting MS. In a secondary-progressive disease course, the disease worsens more steadily, with or without occasional flare-ups, minor recoveries or plateaus. Approximately 50 percent of the people with relapsing-remitting MS develop this form of the disease within 10 years.

Progressive-Relapsing is a rare course of MS in which people experience steadily worsening of the disease from the beginning with clear attacks of worsening neurologic function along the way without remission. This course of MS is rare and is experienced by 5 percent of people.

Not everyone goes through all of the stages of MS, says Mala Aaronson, OTR/L and CRTS, National Seating & Mobility.
In rare cases MS can be fatal, but most people with the disease have a normal or near normal life expectancy. Aaronson says that it doesn’t affect life as a primary factor, but the lack of the body’s response and immunity to other complicating viruses and illnesses is a secondary factor. Occasionally, people with MS are not able to fight respiratory problems because of muscle weakness.

The Environment, Genetics & Family Are Factors
Epidemiologists — medical scientists who study the causes, distribution and control of diseases — have learned that gender, genetics, age, geography and ethnic background play a role in who develops the disease. Studies have even showed that greater incidences of MS occur at greater distances from the equator. In the United States, for instance, incidences of MS are higher in northern states than southern states. The disease occurs more commonly among people with northern European ancestry, and twice as many women develop it as men.

It is clearly a familial disease, says Aaronson, who has a 50-year-old client who lost both of her sisters to the disease, and has a brother living with the disease as well. The levels of severity and the clinical patterns among the siblings have all been different. The client’s sisters, who were younger than her, both passed away. They had the severe, quickly progressing form of the disease.

“She’s actually gone through all of the typical phases and had some cognitive effects and some physical effects, and her brother actually was progressed to the progressive, relapsing clinical pattern very early in life and then leveled off,” Aaronson says. “He got to a very non-functional level and then plateaued there for 15 years.”

According to the National MS Society, there are more than 400,000 Americans living with MS. The typical age of diagnosis for the disease that affects 2.5 million people worldwide can range between the ages of 20 and 50. Although uncommon, people as young as 2 and as old as 75 develop MS as well.

When someone comes to The Boston Home with a diagnosis of MS, Savage typically has 10 years with them before the disease takes over. Many clients come to the home because they can no longer live independently. They’re in the late stages of MS, either with cognitive issues or physically with more functional limitations, Savage says.

Savage has patients that are between the ages of 30 to 80, with the average age being 55. Some may have developed the disease early on, but by the time she sees them, it has progressed. One of Savage’s outpatients is in her 50s and is just starting to feel the effects of the disease.

“She’s still being as active as possible, but as far as her physical skills at this point, she needs help,” Savage says. “Six months ago, she was able to stand and transfer safely by herself, but now her leg weakness has increased, and she is unable to be independent in this activity any longer.”

No One Knows When MS Will Take a Turn
But age isn’t the determining factor of when the disease will begin to significantly progress and take its toll. Savage says she has patients that come in as early as age 45 and even 30.

“It tends to be that you have more problems when you’re diagnosed at an earlier age,” she says. Savage says she has patients who were diagnosed in their teens who are now struggling in their 30s.
Aaronson also believes that those diagnosed at an early age typically have a harder time than those diagnosed later in life. She had a 22-year-old male patient who came to her in need of an ultralight wheelchair, but by the time the chair came in, he was unable to push it safely. Only a few months beforehand, he had walked into her office using forearm crutches. Within a year, he was using a power wheelchair.

But on the other hand, Savage has also seen a 77-year-old woman who had been diagnosed at the age of 50, and she’s still walking part time. With MS, you just never know.

“They’re diagnosing young people more frequently, where it was almost unheard of 10 years ago,” Aaronson says. But typically people are diagnosed between the ages of 40 and 55.

Signs and symptoms of the disease surface long before a diagnosis comes along.
Some people are diagnosed later in life, but showed signs of the disease early in life. It’s not unusual for people to go undiagnosed for years after experiencing their first symptom, Aaronson said. The symptoms can be mild and remitting. Sometimes a person may experience bouts of visual symptoms that they never attribute to MS. When further symptoms occur, that’s when a neurologist is usually consulted. Or patients may have a few weeks of imbalance and attribute it to the stress in their lives or something that’s going on physically, and they don’t consider the possibility of MS or consulting with a neurologist until years later.

“When people are diagnosed, they’ll talk about the history that led up to their diagnosis,” Aaronson says. “Now that they know that they have MS, they can recall incidences that happened five years ago that were clearly the beginning of their problems with MS.”

People deal with the acceptance of the disease differently and at different rates.
Aaronson, who focuses on custom seating and mobility, says 50 percent of MS is an emotional challenge. Obviously, for most people the loss of independence is the scariest and most difficult part of the disease.

“If I’m meeting them, they’re in need of something for mobility, and they’re not walking safely or independently,” she says.
Independence Is Tied to the Right Mobility Device
When someone’s choosing Aaronson’s services a little bit later than would have been optimal, it’s usually to deal with seating issues and structural deformities that are occurring in their bodies. With MS, as opposed to other progressive diseases, fatigue is an exacerbating factor. For somebody who’s had some sort of an injury and needs to strengthen their muscles, a manual chair can be a good mode of exercise, Aaronson says. This is not the case with MS.

In multiple sclerosis, wheelchair propulsion should not be a mode of exercise. “I tend to prioritize quality of life and independence,” she says. “I think it should be access and independent mobility, and if it fatigues them, it’s not the best choice for them.”

Savage says she tries to be realistic with patients and also builds in adjustability. She says if she recommends a power wheelchair, her patient may not need anything special at the time, but she makes sure she gets them a power wheelchair base that can be modified later.

Some prefer the look of scooters and choose them over wheelchairs, but Aaronson doesn’t advise this. A supportive seating system cannot be put into a scooter, making it a potentially unfavorable choice for someone with MS. A scooter may look less disabling, but those with MS aren’t getting the support in the seating system of the scooter that they need. The lack of seating support may lead to or exacerbate postural asymmetries.

“A very, very common scenario is to have someone with MS pull into my clinic in a scooter with their hips shifted way over to the left, and they’re leaning over, leaning on the armrests, barely able to sit up straight,” Aaronson says.
Some MS clients stay in scooters or manual wheelchairs longer than they should because of lifestyle and funding issues. But to many it’s because, to them, power chairs are associated with the progression of the disease. Power wheelchairs, however, can often provide better support and better pressure relief.

“They’re also gaining accessibility in their environments because the mid-wheel-drive power wheelchairs have a much tighter turning radius and they’re much more functional within the home,” Aaronson says.

The Emotional Toll
In some ways, people with progressive diseases go through the same stages as someone dealing with the loss of a human being. They’re sometimes angry and in denial. Since the disease affects people so individually, it makes it harder to deal with emotionally because they’re not always able to understand what’s happening to them, Aaronson says.

“Hopefully with support, which is really key to coping with MS, they can come to some sort of resolution and positive attitude to work with the changes,” Aaronson says. “Acceptance will allow them to continue to move forward with their lives and work with and adapt to their disabilities.”

This article originally appeared in the May 2008 issue of Mobility Management.

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