Tracking Results

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

Tracking Results

Postby SammyJo » Wed Sep 30, 2009 9:31 am

I've seen some discussion on tracking results. The text based patient logs are great for those of us who are going to do this procedure and need to know every detail. But for trying to show results to the outside world, a picture that sums up 10, 15, 20 years of MS history and interventions is helpful.

Here is my homemade version, pegged to EDSS scale
http://healingpowernow.com/images/SJW_EDSS.JPG

Then PatientsLikeMe.com came along
http://www.patientslikeme.com/patients/view/SammyJo

They use their own disability scale, MSRS, but it is a great summary of all interventions, symptoms and progression. And most importantly, other MS patients can search through interventions, see how many are using it, and how each subject is doing. They also run periodic reports across all the data, & send out newsletters on results. It would be interesting if Stents popped up as an effective method. Your doctor can even look at your profile.

I am hoping that institutional studies can quickly prove the stent method, but having a consistent dataset on early adopters might prove useful, if things move more slowly.
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Postby Loobie » Wed Sep 30, 2009 10:04 am

You are way too organized SJ!
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Postby SammyJo » Wed Sep 30, 2009 10:21 am

I just don't want all of our guinea pig efforts to be ignored!

OK, and I'm a number crunching geek. But it works, even if it is homemade patient based evidence. In 2005 Dr. Gironi was intrigued by my LDN survey results of 276 MS patients. She is now the first neurologist to PUBLISH in a peer-reviewed J on LDN research.

Mult Scler. 2008 Sep;14(8):1076-83
A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/18728058
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Postby radeck » Wed Sep 30, 2009 10:31 am

Hi SammyJo,

this is a very good, important, excellent idea! And you did a great job with your own graph imho.
I am having a lot of trouble getting an overview of who has had what venous issue, which treatment, and what result. I think without a survey like the one you mention, it is easy for the outside world or newcomers to be overwhelmed by a bias in reporting, i.e. people who have more problems post OP are likely to report in more detail (maybe...).

I was thinking last week that a small modification to the patient log would do wonders. I.e. a new thread where there is only be ONE POST PER PATIENT (Zamboni or Dake), describing e.g. symptoms before the procedure, results of Doppler/MRV, side effects, and symptom development after procedure. Each patient can keep editing their posts every few weeks or so. Others should refrain from commenting on individuals histories in that thread, to keep it neatly organized.

How does that sound to all?
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Postby SammyJo » Wed Sep 30, 2009 10:41 am

Yes, keeping it internal here would be good, until you have a consistent format, and learn what all the items are to track.
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Postby radeck » Wed Sep 30, 2009 11:16 am

OK, I'll start a one-post-per-patient log today!
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Postby mrhodes40 » Wed Sep 30, 2009 11:19 am

How does that sound to all?


Great but having been a TIMS member for many years I can tell you that in no time at all a newbie to the thread will post on it something like "How can i get treatment?" and someone else will post and then a skeptic will come on to suggest the newbie go to the general forum as this is unproven and away we go to pile of useless chatter once again...

the research thread and CCSVI results threads are both versions that started out to reach this goal that then fell into disrepute.

I like the idea of keeping patient directed and evaluated information, but people have varying abilities to be objective and there is a tendency to bias toward the treatment you are using, so it is not scientific but rather anecdotal. That having been said, the patients like me one seems pretty cool, they are tracking a lot of MSers!
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 radeck » Wed Sep 30, 2009 11:26 am

This could be pointed out in the intro post to the thread and perhaps the moderator could erase such stray posts by newbies? (since it has been clarified in the intro)?
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Postby cheerleader » Wed Sep 30, 2009 12:11 pm

I tried already....if NHE wants to make this a sticky and clean it up (get rid of errant posts), I'd love it!

http://www.thisisms.com/ftopict-7377.html
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http://ccsviinms.blogspot.com
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Postby radeck » Wed Sep 30, 2009 12:25 pm

Great, I saw your thread. Alternative to erasing errants would be to start a new thread, combining the individual's single posts from your thread into one, leaving the old thread as is. Should be less work and avoids that somebody is disappointed because they didn't consider their posts errant at the time.
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Postby daniel » Wed Sep 30, 2009 12:39 pm

Start a new thread, and post in it 10 times to give you some buffer room, then just edit the first post and keep adding additional information to it. If the post runs out of room, you have 9 more posts to edit and add more information into =)

radeck wrote:Great, I saw your thread. Alternative to erasing errants would be to start a new thread, combining the individual's single posts from your thread into one, leaving the old thread as is. Should be less work and avoids that somebody is disappointed because they didn't consider their posts errant at the time.
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Postby SammyJo » Wed Sep 30, 2009 1:00 pm

I'll volunteer for tracking tabulation duties or anything else, will follow the lead of those who know where to go.
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Postby radeck » Wed Sep 30, 2009 1:08 pm

daniel wrote:Start a new thread, and post in it 10 times to give you some buffer room, then just edit the first post and keep adding additional information to it. If the post runs out of room, you have 9 more posts to edit and add more information into =)


Good idea, with one possible exception: maybe patients want to be able to edit their own posts?
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Re: CCSVI Summary Thread

Postby NHE » Wed Sep 30, 2009 10:18 pm

If someone wants to write up a comprehensive review of all CCSVI MS patients, then that would be great. I suggest a new thread. After it is posted, I can make it a sticky and lock it if that is the group's consensus. The post can be unlocked so that the author of the summary can make changes. Such actions will have to be coordinated with me. That's fine. I usually check in on the site a few times per week at least. An alternative to locking the thread would be to make the post sticky and just simply request that the post not be responded to. We could even add a statement that any general inquiries will be moved to their own thread. It's not an ideal situation either way. I'm just suggesting some possible solutions. Note, after thinking about it for a moment or two, I suspect that the second option might be best. That way the summary could be freely edited without worrying about getting it unlocked first.

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Postby Sharon » Thu Oct 01, 2009 2:19 am

Great ideas! As Marie said, we have tried to keep patient logs "clean", but they do seem to get hijacked. Many times it is a "newbie" who is trying to find out information. SammyJo wrote:
I'll volunteer for tracking tabulation duties or anything else, will follow the lead of those who know where to go.

I will be glad to help.
SammyJo, I wonder if we could start a tracking similar to the LDN database.

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