Tracking project pls respond

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Tracking project pls respond

Postby mrhodes40 » Sun Oct 11, 2009 8:14 am

As you may know, our forum is followed by many people who never post but who read our materials with interest.

It may surprise some to discover that some of these people are interested physicians.

One of these people has contacted me and suggested that our tracking project would be more valuable if we used the MSIS-29 instead of the EDSS. This person also suggested that we include the Fatigue Severity Scale (FSS).

These are good suggestions for this reason. First the EDSS is heavily weighted toward ambulation, a symptom that once impacted is unlikely to change because it likely represents permanent nerve loss. Persons using a cane are likely to keep using a cane thus not change EDSS. However the MSIS is more quality of life centric, it has questions related to issues like going to the toilet urgently or sleeping as part of its questionnaire.

Second the Fatigue scale should show the dramatic differences people are seeing in their fatigue levels where this is invisible with the EDSS.

I have found a resource where we could have access to this for our purpose
http://brain.oxfordjournals.org/cgi/reprint/124/5/962

The MSIS is at the END in the appendix.

the FSS is here
http://www.mult-sclerosis.org/fatigueseverityscale.html

Shall we adjust to accomodate this request?

Can someone host these somehow in the thread so we have a resource right here on TIMS to look these up?
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Postby LR1234 » Sun Oct 11, 2009 8:34 am

I think we can keep the EDSS but add the new measurements as well.
I think the more ways of measuring the more accurate picture we will get.
Maybe you could put the criteria for each of the new measurements in the tracking post so people can refer to them.
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Postby radeck » Sun Oct 11, 2009 8:46 am

It's good to hear that physicians are interested in hearing from patients like us what's happening on the CCSVI front. I think it's a great suggestion to include MSIS and FSS measures, for the reason (longer lasting axonal damage versus directly blood-flow related issues) Marie brings up. Though what do people think about continuing to include EDSS scores as well, as LR1234 suggests? I think this is sensible, and wouldn't be surprised if early adopters and those with low EDSS values continue to see these plummet more quickly post treatment. On the MSIS, should we compile a short list form, so that others don't need to scroll down in the article Marie posted?
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Postby mrhodes40 » Sun Oct 11, 2009 8:51 am

Good idea,

One thing I thought of is that people who have already been treated can only guess at the MSIS before....so if I wanted to add that data to my thread I'd have to say "estimate MSIS pre-stent X current score Y"* then date it.

As time goes forward I could potentially change from where I am here, so it would still have value.
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Postby Sharon » Sun Oct 11, 2009 9:49 am

Radek -

How about a topic thread with the MSIS and the FSS measures listed on it. You could link to that thread.


BTW - this is a great idea - the EDSS scale was not telling the whole story.

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Postby Loobie » Sun Oct 11, 2009 9:51 am

I agree Sharon. As I've always said, until you get unambulatory, the EDSS is like pounding a trim nail with a sledge hammer.
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Postby cheerleader » Sun Oct 11, 2009 10:06 am

Wow...thanks for this, Marie. Jeff just did the FSS (we'll do the other test later) said he was all 7s except for exercise, which actually relieved his fatigue a bit, so he ended up 6.5 before stenting!

He says post-stenting he can still get tired some days (not all, but it's not that MS fatigue), and it's no longer crippling..and his score post is a 3 - although some days it's a 1 or less-

This scale actually gave him something to show the change. And I know folks like Mel will also show a large difference.
hope more folks edit and add the scores!
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Postby SammyJo » Sun Oct 11, 2009 10:19 am

It would be best if Radeck could edit the Tracking template to include a line for these new scores, and a link to the questionaires. Those who have already started their reports can just add the lines in when they do an edit.

The FSS link is fine, here is a stand alone survey page for the MSIS,

http://brain.oxfordjournals.org/cgi/con ... 24/5/962/T

I might be able to whip up a script for auto scoring.

Numerics like this are SO important to the outsiders looking in, to show a snapshot profile of the whole group's progress.
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Postby radeck » Sun Oct 11, 2009 10:40 am

Dear Marie and SammyJo, I just updated the tracking intro. Let me know if anything could be improved. Thanks to all for your thoughts and comments.
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Postby mrhodes40 » Sun Oct 11, 2009 12:12 pm

VERY nice thanks Rad!! I did mine already!! I can see this is a vastly superior picture of MS with all of these in place. Wow, I can't wait to see what everything says in 6 months!
:D marie
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Postby radeck » Sun Oct 11, 2009 12:22 pm

Thanks, Marie, I wish that more would start posting on the tracking thread! According to MaggeiMae's list at http://www.thisisms.com/ftopict-8368.html 23 people had procedure already, 2 had testing but no procedure, and 8 are scheduled. That's for Stanford alone! Plus >100 in Italy! Yet so far there are "only" 7 tracking posts. Makes me wonder if we have to make some fundamental changes in the outreach...

I'm working on the Italian translation, but given that many Italians speak english, and few or none have posted on TIMS, I'm not sure that translation will make any difference...
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Postby Jamie » Sun Oct 11, 2009 1:01 pm

Early days yet Radeck.

Let's beat the drum everyone!
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Postby mrhodes40 » Sun Oct 11, 2009 1:11 pm

Maybe MM could note with a check mark on her list who already is tracking?

with the new data points it is really a good tool
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby SammyJo » Sun Oct 11, 2009 7:21 pm

Sarabellum, can you help from here?

I think it is too early to nail the Tracking survey down with survey monkey, the addition of the MSIS-29 & FSS shows we are still in design mode, so maybe give it another week or so to gel.

But what would be great is an automated tool to do the calculation for people on MSIS-29 & FSS scores.

Here is a sample I did under a free surveymonkey account (only allows 10 questions): MSIS-29

If you can set this up so it shows the score to the person that just took it, then they can enter the score in their Tracking survey here at TIMS. Here is: MSIS text
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Postby Sarahbellum » Sun Oct 11, 2009 8:24 pm

http://www.surveymonkey.com/sr.aspx?sm= ... HS6bfrQ_3d

Take a look at this.
It would have a different "look" but the results might be what you want.
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