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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Christmas Miracles Not Always A Norman Rockwell Painting

A snuck down to look at Christmas gifts under the tree.
A snuck down to look at Christmas gifts under the tree.

It was the Tuesday before Christmas, and we were thrilled.  Our Christmas miracle arrived, and it smelled disgustingly wonderful.  A finally pooped for the first time in 4 days.  As we deal with A’s slow motility, we were thrilled we could plan on spending our first Christmas in our new house.

I know who this is without even looking.
I know who this is without even looking.

 

As I it here on New Years Eve, I am happy to say we will all be able to spend our first New Year’s day in our house as a complete family thanks to A getting out of the hospital this afternoon.  I have to confess to a large amount of concern.  After three days in the hospital, she was discharged with the pronouncement of everything that could be done having been done.  There is still a large part of me that looks at this like a cancer diagnosis.  She has been discharged with a mass inside her likely to grow and inhibit parts of her body’s “normal” functioning more as the mass (of shit) grows inside her.   Her body can’t expel it at the rate it grows within her.  Our hope is a  return to a very broken down formula through her g-tube will allow her body to catch up and turn the tide.

So she is home with us, but her miracle is a family life without food outside of gum not to be swallowed and lollypops.  Our miracle is to be diarrhea every day for at least the next month while her body heals.   Our miracle is the resilience of spirit she shows as she happily submits to treatments (that I fear) because J promised she could earn a pillow pet for each of her siblings by being brave.  The first night of “go lightly” earned one for her, and the subsequent nights she got one for her brother and sister.  What a miracle is the bravery born of love with a nature of giving.

A's favorite gift was a camera.
A’s favorite gift was a camera.

My favorite memories of the 2014 start with taking the family to Jamaica in January.  Going to the FDR in Jamaica was an awesome experience for our family with our wonderful nannies, good food, and a time for J and I to reconnect.

On a personal honors and opportunities front, I was lucky enough this past year to serve on two teams hoping to improve medical care in the US.  The first was with Patients Like Me as they try to better gather information from patients to help patients better track what is happening.  The ultimate goal is to shorten the time between findings in a lab and release of new medical products into the market place.

The second opportunity came when I was invited to serve on the American Board of Internal Medicine as a patient advocate.  I would be hard pressed to express how impressed I am with the members serving on their board and the process they use to create their certification requirements.  I feel like serving on both groups has drastically increased my appreciation for modern medicine and its potential going forward.

All in all it has been a great year even if stressful.  My New Year’s wish is that all of my family and friends live well in 2015,  whether in health or illness.

O is convinced he wants to be a Munchkin.  Don't tell him he has been short all his life and thought of as Munchkin like in his enthusiasm.  Just need him to start singing about yellow brick roads and the image will be complete.
O is convinced he wants to be a Munchkin. Don’t tell him he has been short all his life and thought of as Munchkin like in his enthusiasm. Just need him to start singing about yellow brick roads and the image will be complete.
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