Category Archives: MS outcomes

What Numbers Matter?

Sometimes numbers make me seem a little crazy like my daughters wonderful hair.
Sometimes numbers make me seem a little crazy like my daughters wonderful hair.
I asked for a long time why we cared so much about dots on an MRI if they don’t correlate well with symptoms.  As an MS patient for more than 8 years, I don’t care much about the dots on my MRI.  Still, I can appreciate the goal when we use MRI’s to determine whether our MS is “active” or whether a drug is effective.  We need a measurable, and so we pick a variable we feel gives us the most accurate way to model reality.  Is that not the reason man uses numbers for anything, to describe reality in the way which feels most accurate?
When attempting to solve a problem, one must first define exactly what the problem is.  For us patients, the temptation is to think problem begins and ends with our symptoms.  I think this has been my biggest problem with MRI’s as a measure of MS activity.  Even with a stable MRI, my symptoms progress.  This doesn’t mean MRI’s are not a valid way to measure MS.  It just means MRI’s are not accurate enough to paint the picture I am looking to use.
Over the past few years, I have come to appreciate the inherent logic in dealing with complex systems.  Complex systems are different from complicated systems in that, one can never accurately predict the impact of damage to any one place in the system. They are different from the a->b->c…->z complicated systems where one knows the impact of breaking the chain.  A complex system is more akin to a road system.  Interestingly enough, the complex system theory was designed to replicate the brain, but is more commonly used today for other system models like roads.
One of the studies I found interesting was a recent one showing brain atrophy predicted long term cognitive issues were correlated with brain shrinkage and physical issues were better correlated with flares. http://jnnp.bmj.com/content/83/3/282.long Interesting to me is that neither flares nor shrinkage accurately predicted both.
Brain shrinkage would seem to imply a less able system simply by reducing the size of the system.  Even if we can not identify the specific area of deficit, the sum of all the paths now reaches less than it once did.  If the brain shrinks, the number of alternate paths for signals to take likely shrinks too.  The alternate routes for traffic disappear and the fragility of the system increases, even if it appears traffic is moving at the time.  Shrinkage would seem likely to predict future problems.  This study seems to be validating this assumption at least in terms of cognition.  In doing so, it redefines the problem and measurement of MS.  It is no longer enough to simply look for a flare (think car crash).  One must also look to see if the map still needs folding to carry.
I owe thanks once more to http://multiple-sclerosis-research.blogspot.com for publishing multiple posts about brain atrophy in MS patients.
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On a side very cool note, after my interview last week, I was asked to participate on the American Board of Internal Medicine as a patient advocate.  I’m amazed and incredibly honored.  I can hardly wait to find out how I can help.
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Problems With Our Approach to Knowledge of MS Origins (part 2)

Help!  I'm Melting!
Help! I’m Melting!

2. In the The Black Swan, Talebin tells of a thought exercise which I think may shed some light on another cause of our difficulty “Knowing MS.”

When asked which I have better knowledge of, the future or the past, I answered the past because I cannot accurately predict the future.  Who can? For the purpose of the exercise, imagine a cube of ice placed on a kitchen counter.   If left alone for 2 hours, what will the cube look like?  Now imagine an intricately carved miniature ice sculpture of a swan made from the same amount of water as the ice cube.  If left alone on the counter for 2 hours, what will it look like?  I feel fairly confident in my ability to predict the future in this scenario.

Now I imagine coming home from work and finding a small puddle on my kitchen counter.  How can I tell the shape of the ice which made the puddle?  My ability to recreate the narrative describing how the puddle came to be accurately enough to tell the shape of the ice is severely limited.  I will take this one step further.  There is no puddle on the counter.  However, I can not answer the question to describe why the sponge is wet?  My ability to know the past is horrible.

Multiple Sclerosis means more than one cut.  With only this information describing MS, is the determination of cause an easier task than coming home and answering the question of why my sponge is wet?

Beginning of Post:  http://thelifewelllived.net/2013/11/26/problems-with-our-approach-to-knowledge-of-ms-origins-part-1/

Thought 2: http://thelifewelllived.net/2013/11/26/problems-with-our-approach-to-knowledge-of-ms-origins-part-2/

Thought 3: http://thelifewelllived.net/2013/11/26/problems-with-our-approach-to-knowledge-of-ms-origins-part-3/

Conclusion: http://thelifewelllived.net/2013/11/26/problems-with-our-approach-to-knowledge-of-ms-origins-conclusion/

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