Hi Guys,
Because i'm obsessed with ms and what may happen in the future i have been wondering if anyone knows if there is anything that may indicate what disease course you may have.
I have read in the past that what happens in the first 5 years may be an indicator of what your ms may do in the future, if it's going to be mild or more aggressive.
If ms is so unpredictable i don't understand how the first few years may give an indication of what may happen further down the track.
Any ideas?
Elly
Are there indicators for a good or bad disease course?
-
Wonderfulworld
- Family Elder
- Posts: 776
- Joined: Sun Aug 27, 2006 2:00 pm
- Location: Ireland
- Contact:
Hi Elly
that's the problem with MS.
I too spent years looking for the information that would tell me what would happen. Ten years after diagnosis (when my neuro said I'd be probably showing signs of secondary progressive) I am slightly better than I was 10 years ago. But with worsened bits in between.
IF I had taken my first 5 years as an indicator I would be expecting to be significantly disabled by now. I actually improved years 6-10 - a trend that goes against the statistics if you'd taken my EDSS 10 years ago. Even my neuro thought I had "worsening RR-MS" 6 years ago and now I am not thought to be in that category.
You could read all about indicators and then be the one who bucks the trend for the worse, or better. I know that's not the answer you want to hear probably. But what I'm saying is that if you take a trend as giving you hope and then something happens to move you out of that trend-catchment - then you may start to think "oh no, now I'm likely to disimprove" like the statistic said. But it's just as likely you might not.
This article discusses features associated with a "benign" disease course: http://jnnp.bmj.com/cgi/content/abstract/67/2/148
This is also a very good article: http://www.mult-sclerosis.org/msprognosis.html
The stress of not knowing can be unreal sometimes.....
Edited to add - I count that I have 8 indicators of a malignant disease course at onset of ms in the article above, but so far, thank god/unknown deity/my lucky stars...tht has not yet happened.
that's the problem with MS.
I too spent years looking for the information that would tell me what would happen. Ten years after diagnosis (when my neuro said I'd be probably showing signs of secondary progressive) I am slightly better than I was 10 years ago. But with worsened bits in between.
IF I had taken my first 5 years as an indicator I would be expecting to be significantly disabled by now. I actually improved years 6-10 - a trend that goes against the statistics if you'd taken my EDSS 10 years ago. Even my neuro thought I had "worsening RR-MS" 6 years ago and now I am not thought to be in that category.
You could read all about indicators and then be the one who bucks the trend for the worse, or better. I know that's not the answer you want to hear probably. But what I'm saying is that if you take a trend as giving you hope and then something happens to move you out of that trend-catchment - then you may start to think "oh no, now I'm likely to disimprove" like the statistic said. But it's just as likely you might not.
This article discusses features associated with a "benign" disease course: http://jnnp.bmj.com/cgi/content/abstract/67/2/148
This is also a very good article: http://www.mult-sclerosis.org/msprognosis.html
The stress of not knowing can be unreal sometimes.....
Edited to add - I count that I have 8 indicators of a malignant disease course at onset of ms in the article above, but so far, thank god/unknown deity/my lucky stars...tht has not yet happened.
