This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone,

I don't know if this has been tried before but I've been thinking about it for quite some time. I believe it would be quite useful (anecdotally, not scientifically) to create a chart that shows the results reported in the tracking thread "at a glance." To show you what I mean, I humbly submit this example showing only the first 3 posts, to get your feedback (click to download spreadsheet):

tracking thread spreadsheet

Please allow me to explain my logic for the various headings although some are self-explanatory. I think it would get really complex to list all symptoms or even every improvement; it's already here in the forum if you want to read it. I simply propose reporting whether results are positive (it helped), no change, or negative (patient got worse)... see tracking thread for more details. It's just a snapshot and needs to be interpreted as such.

Page - to be able to quickly find the page in the tracking thread
Username
Name
M/F
Age
Dx/Date - This is the diagnosis (e.g. RRMS) followed by the year
Lesions - Locations (brain, spine)
DMDs (CRABs/Tysabri) - I'm thinking we should limit this to the main DMDs, yes means one or more were tried at one point
Relapses - reported relapses pre-op
IBT - Inclined Bed Therapy

Date M/D/Y - date of procedure
Location
Study - MRI/MRV/US (Doppler Ultrasound)
Dx - Diagnosis (stenosis, occlusion, narrowing...)
Where - e.g., left/right jugulars
Procedure - stents and/or angio
Post-Op - any issues (pain, etc.)
Relapses - since procedure
First Rept - first date impact reported
Impact - initial impact (positive/negative/no change)
Last Rept - last date impact reported
Impact - last reported impact (positive/negative/no change)

EDSS - before / after
FSS - before / after
MSIS - before / after

----

Once the above is fine-tuned I will provide a key. ALL input, good and bad, is welcome. It could even be a really bad idea for some reason, for example, maybe being too general is going to give people the wrong idea (look how many positives!) when maybe some of those positives are subtle or even no longer relevant because the person's condition declined later and they never came back to update. Did I mention this is not scientific?

It's not for any particular purpose other than to be able to visualize our own informal data without having to scan the entire tracking thread.

I'm not sure how I'll find the time to complete this but if interest is high I will make it a priority. I've ordered "Dragon Naturally Speaking" to help with my typing issues since my speed has slowed to a crawl.

Pam

I'd like to offer my assistance as a thank you for my lurking over the past few months... i had thought of this a while back, but did just that... think

If you pm me your email address - I will gladly fill in the rest, as i can most definately find the time and maybe you could review/upload it like you did below?

What a generous offer, Murchy! But let's see if anyone is interested first... not getting any nibbles yet.

Pam

sounds like a good idea. I had an IR ask me yesterday if there was aytwhere where he could see just an overview of personal results without spending hours reading.

he does not want a page long "story". Just the facts ma am.

Wonderful idea, Joy! I, too, had given this thought, but was unsure how to proceed. The only comment I'd make is that I'd prefer to see more distinctions made of outcomes than just positive, neutral, negative. Some calibration like -10 for worst outcome (poor Holly), 0 for neutral/no change, +10 for complete alleviation of symptoms, and of course anywhere in between. Optimally, the patient would be able to self-assess on this, perhaps with an additional category to the tracking thread. Another addition to that thread I'd love to see would be: If I had it to do over again, would I? and : Based on my experience and what's been learned since, what would I have done differently? or: My advice to others who are considering CCSVI treatment.

Obviously, as you say, this isn't scientific, but very helpful for the overview, and especially for newcomers, including medical people.

Thank you, Joy!

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CCSVI:  Making Sense of MS

I'm not sure how to make that judgment call... ?

Maybe there would be a section to include a timeframe. Some people dance their way out of the hospital, but others only see slow improvements over time and eventually they also get to dance.

And we need to track those who make smaller (or no) improvements too. At some point, there should be a comparison between their treatment and those that are more successful. Then maybe we can determine whether a change in treatment (or newer technology, technique, etc.) will work better.

Joy's template includes a section for first post and the outcome (positive, neutral, negative) and last post (positive, neutral, negative), with dates. I think by having the first and last posts, it will cover all the dancers and non-dancers over time.

This is obviously only a quick glance spreadsheet and should be viewed as such, but for greater detail Joy's design includes page numbers for the tracking thread and TIMS names so experiences can easily be looked up.

Joy - i have been having a good crack at it this weekend - i'll pm you for your email address to send over in the next couple of days what i have put together so far...

Outstanding and unexpected, Murchy!

YES - please do pursue!!

Thanks. If anyone has any more thoughts before Murchy gets too far... please speak up. I realize the most disappointing part may be having words like "positive" and "negative" rather than something more substantial but honestly it's very difficult to wade thru the info and make good comparisons -- someone may have clearer speech, someone else may be walking, so which one is doing "better"? It depends on how badly they spoke or walked before, and even then, who's to say which improvement should be given the most weight? Which is more important? Depends on who's asking. One person could list 3 improvements (or setbacks), another could list 7. You see the dilemma...

Personally I think having the comparisons of EDSS, fatigue scales, etc. towards the end and at a glance will serve us better.

But... again... I'm no expert. Feedback welcome.

Pam

i have some ideas about this and using google speadsheets. the live form mechanism is nice, and it's easy to set up multiple choice ranges like 1-10 for whatever.

i think also it would be good to have multiple entries, or sheets, or spreadsheets, to show post-op results at 24hr, 1 week, 1 mo, etc.

Ever get anywhere with this? I would have used Excel, easy to understand, but everybody don't have it. What key are you referring to? I would have separate sections for "self-assessed" EDSS, MSFC etc. with a link to instructions for the ambitious. Separate from physician assessed. Can anybody besides neurologists do these tests? There is another piece of contentious real-estate, but nurses usually do the peg, walking, and PASAT in trials, and it ain't rocket science. You can even find PASAT on-line, but it's relatively simple to roll your own, and the MS Society published it. My son made me a pegboard from a block of wood.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

@ badcopy: Give him this link :
http://www.ccsvi-tracking.com/index.php

Here are graphs for balance, mobility, edss.... from over 800 treatments.

I think it is a better idea to concentrate all data at one place (ccsvi-tracking.com)
because the largest database is the most reliable.

R.

This may be true but I rather like the idea of doing without the neurologist for those simple tests, since nurses usually do them in trials anyhow. Neuro exams are another story, and I don't think we can quite do without, although I had a physio perform one. Last I knew, the tracking site was looking for expensive neurologist evaluations, and I don't think it's necessarily necessary. Those guys have loads of real work to keep them busy.

The data set is either derived from professional input, or it's less credible. If it's going to be a mix, I prefer the idea of a separation of self-assessed data, which one can take with the appropriate grain of salt, but which is nevertheless valuable in its own right.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience