Hard to Swallow


The following is NOT a recommendation to “heal thyself” and is written as an imagined correspondence from one person with MS to another with MS.  It is the meshing of real experience with “what could be or have been:”


Dear Jerry,

Wow.  Your swallowing issues sound similar to mine and seem haphazard without an obvious trigger.  Interesting.

My swallowing problem can be excruciating and take me to my knees.  Sometimes, swallowing is absolutely normal.  Sometimes, swallowing makes me believe it is about to become an excruciating experience but nothing happens beyond that initial forewarning sensation.  It annoys me that quite often, two months can go by without even a hint of a swallowing problem. Still, it can happen more than once in a day! Frustratingly, it can crop up when I am eating, taking pills, simply drinking water, or (although very rare) even from the normal function of swallowing saliva!  It is neither consistent nor predictable.

Seven years ago, after briefly reading my email, I had gone to the kitchen and taken one of my OTC supplements (pill) but had difficulty swallowing it: “Difficulty” as in racking pain in the area between my sternum and neck.  The pill would just not go down.  The pain was so agonizing that I dropped to my knees, bent forward over the arm of the couch, and broke into an intense cold sweat.

After a few minutes, it went away.

I felt nauseous when I was finally able to stand but fought it off without up-chucking.  Curiously, at that point my saliva began flowing like a leaky faucet so, I uncontrollably drooled and spit into the kitchen sink for a little while.  My body slowly calmed down but I was physically exhausted.

Later that evening, after lying in bed for an hour, I suddenly remembered I had forgotten to take my multivitamin!  As a consequence of my “episode,” I had completely forgotten about taking it.  I got out of bed and took it but this time I had no difficulty swallowing it.  Talk about being pleasantly surprised and relieved!

The next morning I was able to get an appointment with our Family Doctor who saw me that same day.  He found nothing when he examined me but referred me to a gastroenterologist whom I saw the next week.  After that examination, I was promptly scheduled for my first Esophagogastroduodenoscopy (EGD): a procedure used to diagnose and treat problems in the upper gastrointestinal (UGI) tract.  During the EGD, a narrowing (stricture) of the esophagus was discovered, so an esophageal dilation (throat stretching) was performed. When I recovered I was given a prescription for lansoprazole (Previcid.)  This “was indicated” due to the general relationship of Gastroesophageal Reflux Disease (GERD) to the swallowing problems they typically see.  In other words, he had no way to determine if my swallowing problem was caused by MS.  For a while afterward I did not experience obvious swallowing issues, however it was not long before these problems returned.  Within a few months the gastroenterologist determined I should have another EGD and “throat stretching,” so I dutifully subjected myself to it once more. Again, there were no identifiable changes in my symptoms.

Place settingI found it extremely irritating that from the very beginning I had vehemently protested the diagnosis of GERD.  For crying out loud, I was known for having a cast iron stomach!  I had never experienced acid reflux or heart burn and on several occasions had been known to actually eat ice cream while drinking a beer without consequence.  This was all to no avail: the gastroenterologists kept insisting I probably had “Silent GERD” so I just was not realizing that damage was probably occurring.

In spite of my protests, I followed the doctors’ counsel and treatments. After more than a year of no impact the gastroenterologists capitulated to my plea and consented to allow me to stop taking the acid reflux medicine – only because there was never conclusive evidence of GERD.

There has never been a doubt in my mind about the relationship of my swallowing problem to multiple sclerosis.  It seems to me that too many of the medical professionals I have seen are obsessed with disproving the relationship of MS to many of the symptoms I exhibit.  Why is it I too often I find myself with no explanation of my symptoms and the recipient of the glib and dismissive response “you know, not everything is caused by MS?”  Well, duh!  Are they actually willing to be an obstacle when it comes to diagnosing the source?  Or am I simply being too impatient?

I should not be surprised: Once-upon-a-time the conventional wisdom was that stress did not cause MS exacerbations. It was finally proven that stress plays an undeniable role in MS exacerbations.

[See National Institutes of Health webpage www.ncbi.nlm.nih.gov/pmc/articles/PMC381319/]

I suppose in the absence of a test to establish a relationship between a health problem and MS, there is an irresistible compulsion to rule out everything else often by way of expensive, somewhat risky, and almost always fruitless and tiresome medical procedures and treatments.

It seems so trite but true: I know my body and perhaps have a better recognition of some things than the medical professionals who too often, almost rudely, indicate they do not place much value on the patient’s knowledge and awareness.  MERCIFULLY, the doctor who performed my third and most recent EGD (this year), essentially admitted that to me!  If nothing else, he demonstrated my opinion had value!  I was taken aback and enormously pleased to the point of being giddy.  I fell all over myself thanking him and telling him how much I respected his acknowledgement and appreciated his care.

At one time I thought it was reasonable to believe symptoms were easily identified as MS related or not.  Today I know better.  With so little known about multiple sclerosis, researchers, doctors, and patients are all flailing about searching for the cause and remedies.  It is undeniable that multiple sclerosis is not yet understood and probable that its many impacts will remain an enigma through our lifetimes.

It would be reasonable to presume I am depressed or incensed by all this but I am not.  However it has instilled in me the importance of being my own advocate!

Mostly, I have discovered it remains important to “keep your chin up!”  It helps you swallow.

Your friend,

MSMSMS

 

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