By: Jane, Information Officer
Is MS a terminal illness? This is a question the Information Team at the MS Trust get asked quite often especially when someone is newly diagnosed. It makes sense to ask if you’ve just been told that you (or a loved one) have got MS. Perhaps you’ve never heard of MS or know very little about it. You’d want to know what it might mean for your life, wouldn’t you?
So what is a terminal illness? A medical definition would be “an illness that results in death within a fairly short time. There is no possibility of recovery”. Often death is expected within weeks or months, though sometimes longer.
So is MS a terminal illness? No, it isn’t classed as a terminal illness. It is a life long condition because there is no cure so far. It is a condition where treatments exist but where much better treatments are needed. I should mention that there is an extremely rare kind of MS called fulminating MS or Marburg’s variant which is very aggressive and this type of MS is usually fatal within a few years but this is very much the exception.
Many people with MS live for just as long as the general population. Research has shown that those with more advanced MS are more at risk of potentially life threatening complications – such as respiratory or cardiovascular problems – that can result from reduced mobility, and this can affect life expectancy. This underlines the importance of watching out for any signs of infection, breathing difficulties or heart problems and seeing a health professional sooner rather than later.
So what can we all do to raise awareness of what MS is and also explain what it isn’t? I guess that everyone’s approach is different. Some people will dress up in blue and run cake and information stands for MS Awareness week in April. Some people feel able to explain MS to friends and family and give them our publications, like MS Explained, or send them to our web site where they can get more information. It’s not an easy job to explain MS – it is a complex condition and it is a variable condition but it is not a terminal condition.
I like to remember that Ernest Hemingway famously said “life is a terminal illness” reminding us all that we are going to die of something at some point so perhaps it’s a good idea to make the best of things now.
Tags: diagnosis, information team, life expectancy, MS Explained, MS Trust, multiple sclerosis, publications, research, terminal illness, Treatment
This pre-supposes that being a teminal illness is a bad thing. #I’m sure I’m not alone in shuddering every time there is any discussion of assisted suicide etc to hearthat we are being excluded from thiis option because we are not “terminal”. For near 20 years I’ve joined in with the happy clappy “put a brave face on it” approach but frankly now would rather be given a few months to live than face another 20 years of indignity, pain and misery. So could the Trust please campaign to ensure we aren’t excluded from anything that is being offered to those “lucky” enough to know their suffering will be limited to just a few short months.
I would disagree with your statement that MS is not a terminal disease as would the 20% of people with MS who ” have a considerably shortened life”
The reason for the general misconception about the teminal nature of MS is found in the fact that :-”Routine mortality statistics are usually based on identifying a single cause for each death. This is the ‘underlying cause of death’, defined by the World Health Organisation (WHO) as:
a) the disease or injury which initiated the train of events directly leading to death or
b) the circumstances of the accident or violence which produced the fatal injury
So the disease which initiated the train which directly leads to death is recorded as a respiratory problem (usually aspiration pneumonia ) or a urinary tract infection. As both of these are actuallt secondary to MS it makes more sense for cause of death to be recorded was an event secondary to multiple sclerosis which should be recorded as the primary cause. This would make life a lot easier for MS patients trying desperately to meet continuing healthcare criteria for the purpose of recieving funded care.
Not a second anybody should think MS was a terminal illness! Although feeling devastated and pretty hopeless for about six months after diagnosis, I am back on track, full of hope and trust in research and my medication (Fingolimod since two years).
But MS nurses and Doctors should also think outside the box, encourage patients to stay active, positive, not to give up hope, work and social life and supplements like Vitamin D as well as a healthy diet.
As Churchill said: “Never never never give up”.
Karin, it’s not “giving up”, and I really want to convey the same, positive, message to the newly diagnosed, who surely must see some breakthrough in the next 20 years. But the MS Trust and others have to fight ing for my rights as well as theirs. I’ve spent 20 years doing everythng I ever wanted to do, travelling, concerts, motorsports etc etc.
Fairly soon though the most fun I’ll have is when I can persuade someone to pick my nose for me!. My hair is the only thing thast still works properly It’s just realistic for me to acknowlege that there is a point approaching where I should be able to say “enough” and I really need the MS Trust fighting for my right to do so, especially if such a right is to be afforded to those who are adjudged to be “terminal”
The average reduction in lifespan is 8-10 years, according to MS researchers. One MS consultant gave a presentation stating that the average life expectancy is 30 years. Perhaps more important is the reduction in quality of life before end-stagw MS kicks in. All this could change with highly effective anti-inflammatories, neuro-protective agents, and treatments to encourage repair. Surely in the next decade we’ll see some breakthroughs.