Category Archives: MS progression

MS, Motility Issues, and Another Approach

Keep trying. If you keep failing, look for other sources of strength.  You can climb higher than you ever have before.  O discovered the importance of his feet for this climb, his first rope climbing success.
Keep trying. If you keep failing, look for other sources of strength. You can climb higher than you ever have before. O discovered the importance of his feet for this climb, his first rope climbing success.

During the last week of 2014, my oldest daughter, A, spent three days in the hospital for slow motility issues.  Before A’s recent bouts of stomach issues, I would have been hitting up Google for what “slow motility” might mean in terms of the gut, but after the hospital trip I mentioned in the last post I have been thinking about it a lot.

Slow motility is not a blockage in the gut (constipation).  Rather, it is a great slowing down of the digestive track, a slowing of movement down the track and a slowing of absorption of nutrients.  So with a slowing of the body’s ability to move food down the track being the culprit, I began to wonder why I never hear of MS patients with slow motility.  MS impeding our nerve signals seems to slow every other part of our body’s ability to respond to stimuli.

With that question in mind, I went to patientslikeme.com where Bowel problems are listed as the sixth most common symptom of MS, but included under that symptom umbrella are “any difficulty in passing feces including constipation, bowel incontinence (loss of bowel control), and diarrhea.”  Motility issues are not mentioned, but I note my daughter has had all of those symptoms resulting from her motility issues.  A quick search for “motility” on the site netted nothing.  So I asked the board how many MS patients have motility issues.  The only 2 patients who identified as having motility issues had them predate their MS.  I would also point out many MS patients are on drugs for other MS symptoms which can cause bowel problems, and thus not all bowel problems experienced by MS patients are the result of MS.

If one assumes the common theory of MS these days, the disease is one where our immune system is attacking our nervous system.  These attacks destroy our nerve’s myelin sheath and eventually its ability to transmit signals.  There are numerous studies about the slowing, sometimes to a stop, of parts of the nervous system in MS patients.  There are also numerous studies showing the majority of a healthy immune system resides in our gut-associated lymphoid tissue (GALT).  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2515351/

If our immune system is what is attacking our nervous system, why do we have comparatively little damage to the nervous system closest to the largest concentration of cells in our immune system?  This is the question which has been itching me for a week.  I have posted the question to the MSresearch blog out Cambridge England, and one of their researchers said he would have to look to find me the answer.

I have a few theories which would/could explain the issue.

1)  Measurement error:  On patientslikeme.com, bowel problems were reported but not motility issues.  I am not sure most people with bowel problems get motility studies to assess the cause/ true nature of the problem, and I bet this goes double with MS patients.  My experience is the difficult to explain or prove is often assumed to be the result of MS without ever questioning how MS caused the problem.  So many of these bowel issues could be motility related, and we would not know.

2) It is possible the 70% of our immune system is not the part of our immune system attacking our nervous system.  If this is the case, we have effectively eliminated 2/3 of our immune system as a potential cause of our MS.

3) There is something in the gut weeding off or neutralizing the cells responsible for triggering an attack on the nervous system in our gut.  If this is the case, is this cause replicable outside our gut?

I am sure there are more possibilities, but I was never a very good biology student.  I just find myself trying to attack the MS problem from another angle.  Too often, we respond to what we see in MS with regards to symptoms and progression.  It’s natural to have our attention focused on what we can observe and better yet, measure.

If the measure of the power of science is its ability to predict, then it follows science often draws its power from what we observe.  The trick is to recognize when we fail to see what we expect to see.  For even such failures represent an observation. It is with that recognition that we can start looking for the cause of failure in our expectations/hypothesis.  Perhaps, the answer is already obvious to those who have studied our immune system and our gut.  I just rarely see mentioned anywhere in our nervous system immune to the effects of MS.

Maybe we should look where the symptoms fail to appear in an effort to better explain where and how they do.

 

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I Got Your Crazy Right Here!

If you want crazy, I can do crazy!
If you want crazy, I can do crazy!

At camp this week, O celebrated “Crazy Hair Day.” When it comes to crazy, it’s a house specialty, and we wouldn’t have it any other way.

It was an excuse to take advantage of O’s naturally flamboyant, impulsive nature.  It some ways, it was like asking a cat to sit in the sun.  With O, his impulsive side frequently gets him into trouble,but days like today are our rewards for dealing with the negative consequences of impulsive behavior.  We all get to smile and appreciate the joyful abandon with which he can throw himself into a project.  It is one of his traits I think we need to cultivate as much as possible because it will let him do things as an adult nobody else even considers.  Free thinkers move society in ways those of us stuck in our mindsets will never anticipate and frequently only appreciate in hindsight.

As for me, my crazy was a bit different this week.  I went to a block party to say goodbye for some of our neighbors with whom we have been friends for years.  The crazy part was my inability to remember anyone’s name outside of my family.  Now I have spent minutes remembering my wife’s name, but I have never drawn so complete a blank on so many names with whom we have hung out for years.  I couldn’t even remember their kids names as they played with A, O, and K in the cul-de-sac.  I guess I am lucky I have so much practice dealing with people who know me whose name I do not know.  Years of being an R.A. in college came in handy once more.  Of course, years as the dad of A, O, and K have the same effect.  Their behaviors and stories are frequently a topic of discussion with other parents and bystanders who know us or of us.

Still, I hope this recent memory lapse is the result of stress and pain rather than another flare.  The experience was rather disconcerting, but I do not think anyone else noticed.  I have been lucky for most of the past five years in terms of MS progression.  Reluctantly, I am scheduling a titer count, a test to see the risks for continuing to use Tysabri. I have put it off long enough.  I know the test will say nothing of whether I am having a flare, but it will give me a better sense of the risks I face continuing to use Tysabri.

All in all, it is just another “crazy” week, but it is one with a lasting image to make us smile.

Here’s to the exuberance of youth!  May we all hold it for as long as we can.

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