What if.....

I don't know which is harder.  The uncertainty of chasing down the symptoms and finding out what is causing it or dealing with the symptoms themselves.  Fortunately, most of the time, it isn't painful.  There are exceptions.  When my face has the trigemminal nerve spasms it feels like someone is holding a hot poker against my face.  This is an improvement over the trigemminal issues that led to surgery, but it is still damned unpleasant. 

The most frustrating thing is that, at least by the classic definitions, this is not related to the multiple sclerosis.  MS is central nervous system lesions--meaning brain or spinal cord.  I have recently had a brain MRI and it showed no new lesions.  So that means it is peripheral--relating to the nerves in my arms and legs.  Guess what kids. The EMG/nerve conduction study was normal.  According to the doctor who did the test that means the nerves of my arms and legs are transmitting just fine.  REALLY???? So I am making this up?  No one actually believes that.  They do a physical and poke my feet with a pin and I can't feel it.  They hold the tuning fork that should transmit vibration or cold against my toe and I can't feel it.  But, no one seems to know why.

I am back in the position of being the most annoying and aggravating patient the doctor may have.  I am a big believer in being your own advocate.  Doctors are human.  They (we) get frustrated when there isn't an answer.   There is a path that is followed based on physical exam and tests.  You go to point A, if this is the result go to this test, if not, go  that one.  This holds true up to a point.  There is something called "idiopathic peripheral neuropathy."  Idiopathic means "we are idiots because we don't yet understand the pathology."   Not really, but that is how one of my professors explained it.  It does mean we don't know why this is happening. I tell clients it is "doctor speak" for "we don't know what the hell is going on."  I have been told that may be the final answer.  So, for now, I am going to keep bugging them until we get to the end of any possible path.

In the meantime, I have to keep my stress down and be as okay as I can be.  We all know I have traded addictions.  I used to use chain-smoking  and junk food eating, and throw in a drink or three as my source of comfort.  Now, I use a run, the longer the better.  Some days that long run becomes more of a challenge than maybe it should be--legs cramp up, back hurts....but it is a hell of a lot better (and cheaper) than two packs of Marlboros a day with one or two sodas thrown in for good measure.  I am trying to find a way to deal with all of this.  I freely admit I am scared about it.  What if there is no good answer?  That worries me much more than what the cause might be.  I can be okay with whatever answer I get, I just need an answer.