Category Archives: MS symptoms

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Ten and Forty

This picture dates back to days when I was flaring before I was diagnosed with MS. I was lucky to spend the week with my mom, father-in-law and brother-in-law rafting down the Grand Canyon.

I realized a couple of weeks ago that it had been ten years ago that I had horrible headaches. For months I had headaches bad enough to wake me up in the middle of the night. The irony is the headaches would only go away with sleep. I used to ask my head, as if it were separate from me, “Why do you wake me up to tell me to sleep!” I might have yelled except J was sleeping, and the prospect of yelling with those headaches seemed abhorrent. I went to my primary care doctor, an ear nose throat doctor, an ophthalmologist, and got an MRI. I took steroids and antibiotics. I thought I had been tested nine ways to Sunday. During all this time, the headaches came in waves with good and bad days. It was like this for almost a year before I was diagnosed with “probable MS.”

However even during this time, I was incredibly lucky for I had almost an entire good week perfectly timed to allow me to go on a trip with my mom, my father-in-law, and my brother-law to go white water rafting down the Colorado River through the Grand Canyon. During this week, I rarely needed head ache meds, though this was the beginning of my realization those meds do nothing for me. It was only on the last two days that I began to have problems again. At the time, this was a very welcome break from the stress of feeling as if my eyes could shoot laser beams.

As I hit the ten year mark, it seems a natural time to look back and ask what MS has done to me.  How has it changed me?  Even with Tysabri, I still progress.  It is just a slow progress, almost imperceptible if one’s time frame is carefully chosen.  I saw a doctor on a research board comment about how much more seriously MS would be taken if all the damage happened at once.  Spread out over months and years, patients are assumed to adapt to our invisible ailments.  So, how do I see myself changed?

The biggest changes aren’t to my physical abilities.  Yes, buttoning shirts quickly was nice.  Playing competitive sports, especially soccer, was how I used to draw confidence and get over the worst parts of life.  Multitasking despite distractions sure made life easier. However, these things are small compared to the biggest change I see in myself.

The biggest change I see is far more insidious, how I measure success day to day.  For most of my life, I have tried to progress, to do better today than yesterday.  As time has gone by, I find myself ever more trying to stave off degradation rather than improve.  I run three or four times a week, and I keep track of my times and abilities to run intervals during my run.  More and more often I find myself changing goals from running a marathon to running another half marathon.  I find myself satisfied equaling glories past.

In moments of honest reflection, I have to admit much of what I see on these fronts could be as much a factor of rapidly approaching forty years old rather than ten years with Multiple Sclerosis. I simply fear MS ages me faster and faster year by year. Still, my bet is many people approaching 40 suddenly find themselves noticing all the ways we are no longer 21. C’est la vie.

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application of logic, expectations, how we think, intuitive leaps, MS, MS progression, MS research, MS study, MS symptoms, MS treatment, Multiple Sclerosis

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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