Tag Archives: MS symptoms

Lonely With a Cure

I love you despite your craziness if you don't mind my obsessive drive to eat poop.  Deal?
I love you despite your craziness if you don’t mind my obsessive drive to eat poop. Deal?

It seems I have written before about the gulf existing between Wellville and Sickville. It comes to a point where it feels impossible to remember what it was like to be well or even have one’s feeling truly understood. It is certainly an emotion commonly expressed on message boards and amongst friends with similar conditions. However, there is a side effect to this gulf because it sits between us and those with whom we would otherwise be closest. How many things are more isolating than feeling like those who have known you longest and often best no longer understand what you experience? What’s worse is feeling the only way they would understand would be to have the same experiences and know you would never wish that upon them. So the loneliness problem is a common side effect of any medical condition.

In the U.S., we prize our individualism. We celebrate our poets who could go off into the wilderness to find themselves. We rarely talk about our cultures increasing segmentation and physical divisions. For example, I find instant messaging with in the office to be a terrible, yet common, practice. I am 3 cubes over. Stand up, walk over, and let’s talk. Ten years ago, I heard a presentation where it was pointed out the best way to predict levels of crime in a neighborhood was to find out how many people knew their neighbors first names. I still find it hard to believe how many people do not know their neighbors. As a culture, I guess we go home, shut our doors, eat and watch TV/go online.

No wonder we do not recognize the public health risk of loneliness. How does one recognize the lack of something one is not used to having? Our culture makes being alone seem desirable or at least like we should feel fine being alone. Now there is a growing body of evidence suggesting loneliness is a driver for many adverse medical conditions.

One of my favorite meta studies looked at 70 studies involving more than 3.4 million people who were on average 64 years old at the time of their study. Over an average duration of study of seven years, roughly a quarter of the participants died. Those who reported being lonely were 26% more likely to have died during the study, and people living alone had a mortality rate roughly 32% higher than those living with others. One write-up of this study can be found at lonely.

The double edge of life in sickville is when our illnesses drive away those whom we love. It’s not easy sleeping in a bed with somebody whose spasms wake you in the night. Who wants to be close to a person whose touch can be so warm as to burn, whose emotions and thoughts seem to wander randomly? It’s hard on everyone, and it creates a cycle where illness pushes people away causing loneliness leading to still more illness.

On the more positive side, there is an increase in looking to “fix” the brain rather than just treat symptoms. brain hack

Rather than try to increase the pleasure chemicals in our brain to combat depression, what if we could just fix the part of our brain causing the problem? From my perspective as an MS patient, this treatment route sounds fascinating. If you are studying the circuits in my head, can you just fix them? Will doing so still leave “me” in tact? While you’re in there fixing my circuits, could you please make everything run just a little more smoothly or would a perfectly operating nervous system leave me without anything to commiserate over with others. Would it leave me more lonely?

The part of this study which scares me is the seeming potential to change who we are. It leaves open the question of what exactly make us the way we are. Are our neurosis a key part of us. Love me, love my craziness, but don’t worry we can change the crazy me to a more comfortable me later?

At least my dogs love me the way I am.

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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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