5 Things You May Not Know about Multiple Sclerosis

woman walking with disabled personMultiple sclerosis (MS) is a progressive autoimmune disease that results in neurological impairment due to lesions on the myelin sheaths that cover nerve fibers and axons. About 400,000 people in the United States and 2.3 million worldwide have MS.

At this time, we do not know what causes MS. There are many theories, but no concrete explanation to date.

Here are some things you may not know about MS. All data presented are from the National MS Society.

1. MS has four types.

Most people (85%) with MS have relapsing-remitting MS (RRMS) type. With RRMS, people may have one or more symptoms during an exacerbation/relapse, then be symptom free for weeks, months, years, or even decades. When the next exacerbation of the disease occurs, the same person may have a different symptom or set of symptoms from previous exacerbations. Exacerbations are caused by inflammation, known as active lesions.

Secondary progressive MS (SPMS) occurs in some people with RRMS. For those people, SPMS is considered the second stage of the disease. With SPMS, the remission between flare-ups is no longer present, and people with this type of MS generally have some symptoms at all times. The number of people who will progress to this stage is hard to determine because of the unpredictability of the disease.

Primary progressive MS (PPMS) is the most debilitating type of MS. About 10% of people with MS are diagnosed with PPMS initially. With PPMS, the disease progresses steadily, with no remission. The chronic nature of symptoms in those with PPMS is believed to be related to permanent nerve damage.

Progressive relapsing MS (PRMS) is diagnosed in only 5% of people with MS. With this type of MS, the disease progresses steadily, with some brief remission in the early stage.

2. MS has no cure or treatment, but the progression can be slowed for some with disease-modifying drugs.

Although there is no cure or treatment for MS, those with the relapsing-remitting, secondary progressive and progressive relapsing types often find that intervention with disease-modifying drugs prevents new lesions from forming, thus slowing disease progression and altering the course of the disease. Some drugs on the market can be used to help treat symptoms during a relapse/exacerbation.

There are now 10 disease- modifying drugs for MS, many that have been approved within the past few years. These drugs are very expensive, but patient assistance programs through the pharmaceutical companies can help those who qualify access the medication.

3. MS affects mostly Caucasian women of northern European descent.

For reasons we do not clearly understand, MS is diagnosed in women 2.5 to four times more than in men. It is also found primarily in people far from the equator. People of northern European ancestry, particularly from Scotland, have the greatest risk.

In general, one person out of 750 in the United States has a chance of being diagnosed. Among those with first-degree relatives who have the disease, the risks increase to one in 40. Those who have an identical twin with MS have a one-in-four chance of diagnosis. Some combination of genetics, geography, ethnicity, and possibly an infectious trigger are believed to be responsible for MS, according to current data from the National MS Society.

4. Only about one-third of people with MS use wheelchairs 20 years after diagnosis.

When we think of MS, most of us imagine a person who is unable to walk. MS does affect gait, mobility, muscle strength, and flexibility, but not for everyone. Research shows that only one in three people with MS use wheelchairs two decades following diagnosis. Some use canes or other devices for walking assistance.

An active lifestyle is important for people with MS to maintain their strength and mobility. Adaptive recreation, yoga, hydrotherapy, hippotherapy (horses), and other activities can make a real difference. Many years ago, people with MS were told not to exercise. However,

Jimmie Heuga, an Olympic medalist who was later diagnosed with MS, changed the mind-set in the field of MS treatment about exercise.

One issue to be considered with regard to exercise for those with MS is heat sensitivity. Becoming overheated often triggers a pseudo-exacerbation in which the person experiences symptoms for several hours or days. For this reason, people may need to use cooling equipment when exercising or outside on hot or humid days. MS fatigue is also an issue to be considered, as most people with MS experience this symptom most of the time. Physical therapy can be helpful for people with MS who have muscle spasms, stiffness, mobility, balance, gait, or other problems.

5. People with MS often experience mental health or cognitive impairment.

About 50% of people with MS will experience cognitive impairment. This is most often a problem with executive functioning, such as planning, spatial relations, following directions, working memory, prioritizing, and making decisions. People may one day simply forget how to drive home from work, or get lost going to a grocery store where they have shopped for years. It may take people longer to think of words that they normally use, or respond to questions. These changes can be very frightening.

Depression can be a symptom of MS or secondary to the disease due to lifestyle changes and losses. Depression is not related to the degree of disability. Anxiety is also reported frequently by people with MS due to the unpredictability of the disease. Suicide rates are higher among people with MS than in the general population and among people with other chronic illnesses.

If you know or work with someone with MS, be aware that every person experiences MS differently.

© Copyright 2014 GoodTherapy.org. All rights reserved. Permission to publish granted by LuAnn Pierce, LCSW, therapist in Denver, Colorado

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • josie

    josie

    April 28th, 2014 at 3:14 PM

    I think that the reason that MS can be so frightening is that it can seemingly take healthy and vibrant people and turn their world upside down just over the course of a few weeks or months. It can be scary to go from having nothing wrong with you to experiencing symptoms such as the ones that go along with MS, and to think that even though we know so much aboutt he disease ultimately it is one of those that continues to baffle and strangle the lie out of people typically when they otherwise seem to be the picture of vibrancy and good health.

  • Marvin

    Marvin

    April 29th, 2014 at 3:25 AM

    Of the 10 or so meds that have been shown to work well when treating MS, why are they still so expensive and why don’t more insurance companies help their members have access to them at a more affordable rate?

    I have never understood this about insurance and the health care industry as a whole. If there is something out there that could help but it is a little on the pricey side then why not try to make it more affordable so that there is more access to the help and therefore the prices for other health care and medical care that a patient needs should then go down?

  • Tonya Sutherland

    Tonya Sutherland

    April 29th, 2014 at 3:38 PM

    The suicide numbers with those with MS are really pretty scary, especially when you think about the demographic that this disease is hitting. So maybe what the doctors should do would be to put their heads together and work out some way to jointly offer these patients not only routine physical care but have a counselor or therapist who could also be a part of the general treatment plan as well, so that we can do more about curbing these numbers among the MS population.

  • William

    William

    April 30th, 2014 at 7:23 AM

    I am curious about how many studies there currently are that are looking at the causes of MS. The sooner we can learn what causes the disease then I think the sooner we could have a cure or at least a management system in place so that those who live with MS do not have to lose so many of their daily abilities.
    I have seen in my own mother just how debilitating this can be and she was never the same after the diagnosis. I know that she felt like it diminished her as a person even though none of us felt that way and she always felt like she was a burden, again, we never thought that.
    But ever since I had to watch her live with that I have wanted some definitive ansers about where this comes form and how much longer researchers think it will be before we have a cure.

  • LuAnn

    LuAnn

    April 30th, 2014 at 7:23 PM

    Finding a cause and a cure is the priority of the National MS Society. You can read about the research they fund and progress being made on the website at nationalmssociety.org/Research/Research-We-Fund

  • whitt

    whitt

    May 1st, 2014 at 3:46 AM

    I did not know until I read this that there are different types of MS. I have never heard it explained like that at all but I guess it makes sense since many diseases have differing variations of severity.

  • Justine

    Justine

    May 3rd, 2014 at 7:17 AM

    This seems like one of those diseases that impacts a whole lot of people every year and still you just don’t hear that much about it in the media. I wonder why that is. I think that maybe there hasn’t been the rallying cry for a cure from this community like there has been for something like AIDS, cancer, things that most of us are more familiar with and yet there are many people who every year receive this diagnosis too.I understand that most of us have a cause that is a little more near or dear to our hearts but I would hope that this shows up that we have to, need to speak up for all of those out there who are sick and who are in pain and who may not have the strength to pursue that type of attention for themselves anymore.

  • mike

    mike

    May 9th, 2014 at 9:27 AM

    when you read this statement “Only about one-third of people with MS use wheelchairs 20 years”, you wonder how callous some people are…you have to ask yourself, what would the statement be if MS was a contagious virus and if you got infected that 1 in 3 would wind up in a wheelchair…there would be a national campaign to stop that virus and it would be headline news

  • Liz

    Liz

    June 12th, 2014 at 4:00 PM

    I have had ms for 15 years and even doctors and neurologist do not understand it. I can be an absolute mess inside and look so well on the outside some days.

    It is hard to live with and wish more could be done. I manage my best but some days I am really scared inside but try not to show it.

  • Monalisa

    Monalisa

    June 5th, 2017 at 2:28 AM

    I have me for 38 year. I have my ups and down. I have chronic pain with mines,muscle spasms. And why can all that money can find something to make more miline in our body’s make it stronger. And l think it has to do with protein in our body. Could be think about.

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