Sunday, 3 March 2013

Predicting MS Explained


If you want to get the real graph and information, it is best that you download the paper, request it from your library or purchase a copy from the publisher. 

However to give you an indication here is adapatation of the calculator.

(1) You need to know how long you have had the disease 
      (0-45 years)

(2) Next you assess your level of disability 
      (so see below) 

(3) Work out how you are doing in relation the general population
In this version. Work out where you are

1= Normal
You may have some mild symptoms, mostly sensory, but they do not limit my activity. If you have relapse you return to normal.

2= Mild disability
You have some noticeable symptoms, but they are minor and have only a small effect on your lifestyle.

3= Moderate disability
You don’t have any limitations in your walking ability. However, you do have significant problems that limit daily activities in other ways.

4= Gait disability
MS does interfere with your activities, especially walking. You can work a full day, but athletic or physically demanding activities are more difficult than they used to be. You usually don’t need a cane or other assistance to walk, but you might need some assistance during an relapse.

5= Early cane
You use a cane or a single crutch or some other form of support
(such as touching a wall or leaning on someone’s arm) for walking all the time or part of the time, especially when walking outside. You think you  can walk 8m in 20 seconds without a cane or crutch. You always need some assistance (cane or crutch) if I want to walk as far as 300m.
 
6= Late cane:  
To walk 8m, you need a cane, crutch,or someone to hold onto. I can get around the house or other buildings by holding onto furniture or touching the walls for support. You may use a wheelchair if you want to go greater distances.
 
7= Support on both sides
To be able to walk as far as 8m you must have 2 canes or crutches or a walker. You may use a scooter or wheelchair for longer distances.

8= Wheelchair/scooter
You main form of mobility is a wheelchair. You may be able to stand and/or take 1 or 2 steps, but you can’t walk 8m, even with crutches or a walker.
 
9= Bedridden: Unable to sit in a wheelchair for more than 1 hour.

The Chart
Place a ruler from top to bottom at your disease duration, look in which layer you are based on your disability (i.e. 1 to 9). Then look at the percentage range for that level of disability. If you are below the thick black line at 50% then you are doing better than average or above the black line you are doing worse than average. The percentages give you an indication of how far from the average you are.

This study was based on studying a lot of North American, White, Females so if you are differnt colour and sex it may be different and in the age of new DMT then the course may be different also. It is a guide and only that


11 comments:

  1. Goodness me, within seven years of diagnosis I have gone from normal to being completely dependent on crutches. I can barely walk even with aids and my PPMS is very much affecting me. In that sense I am doing much worse than average and my prognosis is a very bad one.

    However, saying that, my body looks awesome. I have been bodybuilding for 12 years now and kept it up even after diagnosis. I lift some seriously heavy weights and even have a bit of a six-pack. To see me sitting down you'd never even think I was ill, but if I had to move around then you'd probably think I've been in an accident or something. I look good but very much struggle to get around.

    What I am trying to say is that there are ways around one's disability even when the MS has progressed in a bad way. Now I accept this may not apply to MSers that are bedridden, but I belong in the 7 bordering on to 8 category, and am still very active in my own way. There is a female MS bodybuilder in America called Cindi that has a body to die for and she is wheelchair bound. It's amazing what physical capabilities even very disabled MSers still have.

    I may be doing worse than average but try telling my personal trainers that. I put them in the shade. All this labelling of people is the wrong thing to do and I find it pointless and irresponsible. You can't draw a thick black line on a graph to make sense of MS progression, MouseDoc.

    ReplyDelete
  2. "I find it pointless and irresponsible"

    People on the blog asked for the information

    ReplyDelete
  3. So 95% of the MS population are doing better than me.

    7 years since diagnosis and EDSS7 already.

    :-(

    ReplyDelete
  4. Unless you are danielle, I am thinking you are male. This study is based on 74% females. Males tend to get MS later than females

    ReplyDelete
  5. So am I reading it correctly to think that this graph suggests - from this cohort - that the average is to be at 3 (mod disability) after seven years and for people to take (on average) around 7 years to progress from 3 (mod disability) to 4 (gait diability) and then roughly double that (15 years) before reachng 5 (early cane)?

    ie reading from the above graph my takeaway is that for 60% or so, progression is slow, even for secondary progressives, and that most people do not require a wheelchair nor are bedridden even after two to three decades.

    It will be interesting to see how much/if DMTs impact, given the makers of DMTs seem to sidestep comments on level of disability with the narrow focus on number of relapses (and usually only over a two-year period), and
    given they are not even recommended for those with progressive forms who while a smaller proportion of ms-ers also bear the brunt of rapid progression.






    ReplyDelete
  6. My uncle has MS and is on crutches. He is talking about buying a wheelchair to make life easy for himself, but he's involved in sport and is always going to gigs and stuff. According to that chart he's in a hopeless situation because his progression happened pretty fast, but he's living a pretty full life.

    You just have to think around disability, not be overwhelmed by it. Life's good.

    ReplyDelete
  7. I was one of the few voices who said they weren't sure this was a good thing.... but of course I've now tried it and I AM depressed! I reckon I was 4 pretty soon after dx ten years ago, as my gait was affected from day one. I am female and was dxd at age 53. However, I have stayed constant and am really not that much different from day one. It's still depressing to see I am worse than average, but hey ho. It's my fault for looking - but I do note that if I can keep as I am for five more years I'll be 'average' - at least I think that's what it is saying!

    ReplyDelete
    Replies
    1. The average age of the people at onset who made up this data set was 30 and the average age was 37 with 95% of the sample plus or minus 19.6 years. At plus 16 years in relation to age at diagnosis you are on the outer limits of this range, so more than average

      Delete
  8. I know I'm being very thick here, but does your comment affirm my analysis?

    ReplyDelete
    Replies
    1. If you are a 4 and 10 years in then you are already average and at 15 years you will be a 4 if you are average. On average a 4 occurs between 6-15 years. If you were a 4 at year 1 then this would occur between 15-28% of the time. Which did not look good but as you say 10 years on and you have stayed the same. It should this can be a guide only, but if you are given an option o a dangerous drug and you are doing very well you may not want it and vice versa. I have done the percentage the wrong way round should that gone from 100-0% not 0-100%

      Delete
  9. Wonderful, something else to make me depressed about my MS. I already think that, somehow, I am not doing something right because everyone else I know with MS seems to have little trouble physically. Then I look on this scale, and it confirms that I'm hopeless and at the end of the downward spiral. Makes me want to give up totally.

    ReplyDelete