MS Prognosis

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MS Prognosis

Postby MrT » Wed Apr 27, 2005 12:36 pm

Due to a basic lack of symptoms for a number of years I have not really kept up with all the latest MS news and research. With a recent return of symptoms I have again begun reading and trying to catch up somewhat.
I'm interested in prognosis which I realize is highly variable from one individual to the next. As with many other aspects of MS there seems to be a lot of conflicting reports as to it's course or prognosis.
I have read in some sources that MS is infrequently directly a cause of death except in rare events such as transverse myelitis perhaps.
I have read that MS life expectancies are usually only maybe 5 years shorter than non-MSers with the real problems being side effects of immobility such as decubitis, urinary tract infections, pneumonia or sepsis in conjunction with these complications.
Now I hate to dwell on the negative, but am trying to find realistic answers. I recently read one source which bluntly stated that at least 50% of MS patients are usually dead within 30 years of onset. Are there other more encouraging recent data? Are there any long-timers out there who have been dealing with this disease for 20 or 30 years or more? How are you doing?
Thanks,
Tracy
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Postby Arron » Wed Apr 27, 2005 12:49 pm

I don't have much to add to this except that without context, those numbers are not useful. 30 years after onset-- when was the average age of onset and how relevant was that age? Or are they making the bolder claim that irrespective of biological age, 30 years + diagnosis yields a 50% death rate?

E.g., I don't believe this claim can be true for people who are diagnosed at 17, but might make some sense for someone diagnosed in their late 40s.
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Postby bromley » Thu Apr 28, 2005 2:28 am

MrT,

Life expectancy for those with MS, from what I have read, is a complex issue and a changing one. Jacqueline du Pre the famous cellist died at 42 about 15 years after diagnosis, I read that the mother of J K Rowling (Harry Potter author) died in her mid 40s. But many family members have told me of Mrs X who is 80 and has ms etc etc. My neuro told me that those with MS live a 'near normal life span'. It seems to depend on your sex, what type of ms you have and how aggressive it is and what functions it disables. Also, just because you have ms, you must have pretty much the same chance as getting heart disease, cancer etc as if you didn't get ms. The other complication is suicide which is 7 times higher among the ms population than the general population (mainly young men). Every case will be different and as medicine progresses the life span of those with ms should improve.

The real issue is not really life span but quality of life. Some ms sufferers experience paralysis from the neck down (rare but it happens). I think I would swap 10 years of being mildly disabled than 20 years in a much worse situation. But these are of course personal decisions and each person with this disease will have their own view.

Hopefully, with more treatments coming on stream and better care etc the vast majority of those with ms can enjoy a near normal lifespan and a reasonable quality of life.

All the best

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Postby MrT » Thu Apr 28, 2005 4:59 am

Arron and Bromly,

Thanks for the replies. You both make very good points. It's always nice to hear the insight of others and to look at things from other perspectives.
I certainly agree that quality is more important than quantity, and I too would gladly sacrifice 10 years for a decent quality of life.
Best wishes,
Tracy
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