primary progressive ms

MS Progressive Types: Frequently Asked Questions

Vicki Health Guide June 24, 2009
  • This series of articles about Progressive MS has a lot of information, and not all of it is easy to read or understand. Perhaps a good way to review the subject is to cover some of the frequently asked questions.


    How do I know if my MS is a Progressive type?
    MS may start with an attack followed by a continual increase in the symptom severity, and that is Primary Progressive MS.


    If MS starts with a Relapsing/Remitting course, it will probably advance in time, between ten and forty years, and the clear relapses will be replaced by a gradual worsening of symptoms. When there are no longer periods of recovery, that is Secondary Progressive MS.


    Besides the functional characteristics, doctors can see that MS has advanced to a progressive course by using an MRI and EDSS (Expanded Disability Status Scale). The EDSS is a standardized measure of global neurological impairment often used in MS to determine type and severity. The National MS Society explains the scale.


    Will I be in a wheelchair?
    Not necessarily. Seventy-five percent of all MSers will never use a wheelchair. It takes an average of at least 20 years before any MSer needs a wheelchair. However, those with Primary Progressive MS have a shorter length of time, about 6 or 7 years. These averages were determined before the disease-modifying drugs were in widespread use. Hopefully, these drugs are delaying onset of the symptoms and there will be longer times before life begins in a chair.


    Here are thoughts of Kimberly Fabrizio here on Health Central.


    Many people use a wheelchair as a tool of convenience. Using a chair for long distances and to conserve energy during periods of tiredness might even postpone the time when there is no choice but to use a wheelchair full time.


    Will I be disabled?
    This is a tough question. MS is a disability, but an MSer is not considered disabled until progression has stolen the ability to earn a living wage and fully perform daily functions without aid, and sometimes substantial aid.


    In the UK, MS is covered as disabled from the moment of diagnosis under the Disability Discrimination Act.


    In the US, the Americans with Disabilities Act (ADA) defines a disability as an "impairment that substantially limits one or more major life activities."


    For US disability insurance (SSDI), the question is not "Are you disabled?" but "Are you disabled enough?" The main criterion is whether your condition prevents you from doing your past work or adjusting to other work. Their criteria uses five questions to determine if your disability qualifies under the Social Security definition.


    Will I still be able to play sports?

    Of course. The type and intensity of the disability may restrict the type of sport or the type of adaptive equipment required, but yes, you can play sports. We have all seen the neighborhood wheelchair basketball game, at least in the movies, but it doesn't stop there. Many sports enthusiasts have developed disabilities and then developed adaptive devices that enable them to continue their beloved sports. Most sports now have an adaptive version, but it doesn't stop there.


  • I remember watching the Beijing Olympics last summer, and shortly after, the Paralympics. Participants were world class athletes with disabilities, and some of them were MSers. Contests were in standard Olympic events -- of course basketball, but also rugby (yes, rugby), swimming, rowing, equestrian, shooting, wheelchair volleyball and many more.


    Yes, you can play sports. Is any sport beyond the MSer? Ask Wendy Booker and Lori Schneider, MSers who tackled Mt. Everest.


    I never thought of dance as a sport, but here's a video called sports dance.


    Will I die of MS?
    Few MSers -- I have read less than 1% -- will die directly from the disease. Around 10% will die indirectly from MS, from complications that lead to dehydration, kidney failure, aspiration, or, because of extreme depression, suicide.


    Let me refer you to this question as it was answered last year right here on Health Central.


    How fast does it progress?
    Researchers do not know and they cannot predict a rate of progression with any degree of accuracy. There are rather benign courses that progress slowly, or seemingly not at all. Then there are malignant disease courses that progress quite rapidly. Even aggressive MS sometimes goes through a plateau where there is little or no progression. The rate of progression seems to be an individual factor.


    How do Progressive symptoms differ from RRMS?
    Symptoms in Progressive MS are the same as those familiar in Relapsing/Remitting MS. The difference is in intensity and the fact that there are generally no relapses. In Progressive MS, there are also no periods of remittance or repair. The symptoms are worse and continually worsen.


    I have Progressive MS. What should I know about nutrition?
    Good general health makes us all feel better. There is anecdotal evidence that certain nutritional practices make a difference in MS, and maybe more than that. I wrote an article about how nutrition affects MS.


    Lisa Emrich referred to the benefits of good nutrition when answering a question here on Health Central. Dr. Amy Thomas has a profile that tells us "I'm happy to be promoting good nutrition as a step toward wellness for people . . .."


    Further, Bing, the new "decision engine," finds a long list of results on MS and nutrition.


    It appears there is a consensus that MS benefits from good nutrition.


    Is there any hope for the future?
    I think there is always hope. More progressive MS research than ever before is taking place, and drugs taken in the early stages may delay entry into Progressive MS. More and more MSers with a progressive form of the disease find their quality of life is good. Better treatments are being developed and there is always hope a cure will be found.


    "The very least you can do in your life is figure out what you hope for.

    And the most you can do is live right inside that hope.

    Not admit it from a distance, but live right in it, under its roof."

    ~ Barbara Kingsolver, American writer (b. April 8, 1955)


    Is MS ever funny?

  • I think so. The trick here is to laugh at the situation, not the person. I think a healthy sense of humor is directly beneficial and that laughter strengthens overall health.


    "Humor prevents a "hardening of the attitudes."

    ~ Joel Goodman, Founder of the Humor Project


    Where can I learn about Progressive MS?
    There is a tremendous amount of information online at sites such as NMSS and MSIF. Health Central has shareposts where other MSers write about their experiences. Enter "Progressive MS" as a search term to get a list of possible articles of interest.


    Does medication for RRMS work for Progressive?

    In the beginning of Secondary Progressive MS, it is not unusual to continue with the RRMS medication. However, by the time the relapses stop, the medication also stops being effective. Another RRMS medication may be substituted or another treatment like Novantrone® is prescribed.


    There is no approved medicine for Primary Progressive, but sometimes RRMS medication is used anyway.


    Will it affect my insurance?

    I do not know. I have completed many insurance forms and never have seen a question asking or indicating that I have Progressive MS. However, in forums I have seen anecdotal evidence indicating insurance is denied for Progressive MS, especially for Primary Progressive MS. I have also read posts from others who seem to have little problem with insurance coverage. I have heard many complaints about the small financial amount covered, but that is not exclusive to Progressive MS.


    Can my children inherit MS from me?
    Your children cannot directly inherit MS. However, you can pass a chromosome that will make your child receptive to developing a central nervous center disorder. There is evidence that many, even most, MSers carry the same gene types, chromosomes and physical characteristics.


    My father had Parkinson's Disease, and I am convinced my grandmother's unidentified illness was MS. We hear of many family groups that have MS, siblings, parents/children, so that indicates more then coincidence.


    Is MS the same as MD? Are MSers Jerry's kids, too?
    Of course not. MS affects the central nervous system. Muscular Dystrophy (MD) affects the muscular system.


    People who do not know often confuse the two. The acronyms are similar and both can be physically devastating. Unlike MS, MD is definitely genetic, affects males more than females, and is likely to result in early death.



    Need more information? The National MS Society provides questions and answers for both Secondary Progressive and Primary Progressive MS.


    For specific questions not found, just ask Health Central. Someone who knows will answer. There are also many other general question and answer sights available on the Internet. Question & Answer Sites


    Is there something bothering you because you do not know or do not understand? Don't know? Find out!


    "If we would have new knowledge, we must get a whole world of new questions."
    ~ Susanne K. Langer, American philosopher (Dec. 20, 1895 - July 17, 1985)


  • Next time I will complete this series on Progressive MS.