The Road to a Diagnosis

It all started about a year ago.  Suddenly Jim was experiencing a constant urge or need to swallow. While most of us don't even think about swallowing, Jim did.  He would continually drink water or eat just so he could satisfy his urge.  He had recently changed his eating habits, maybe this was his body reacting to the new healthy diet.  A few months later came the stiffness in his neck, shoulder and jaw, and eventually slurred speech and muscle spasms in his upper body, primarily in his arms and back. His upper body literally looked like his skin was crawling, constantly.  It was at this point, we knew something wasn't right, but had no idea how wrong it really was.

Our first doctor visit was to the general practitioner on June 25, 2012.  Jim had a blood test to test for everything under the sun, a MRI and endoscopy to test for throat cancer and told to take an ibuprofen daily for 30 days to decrease any swelling in his shoulder.  The pain was attributed to years of playing football, maybe a torn rotator cuff or working construction.  The slurred speech, and muscle spasms, well no one knew.  Needless to say, the tests all came back negative, and Jim never took daily dosages of ibuprofen.  He knew that ibuprofen wasn't the answer, but what was, we had no no idea.

It was at this point I hit the internet and hard.  I researched and googled every symptom Jim was having on a daily basis, and I think I diagnosed him with about 15 different possible conditions (surprisingly, ALS not being one of them).  Maybe it was a pinched nerve in his neck, MS, or other things I can't pronounce or remember.  One common factor though, was a "neurological disorder".   This led us to make an appt. with the neurologist.

September 4, 2012 was our first visit at Dr. Preston's office.  More blood was drawn, an EMG test and a MRI were all done over the course of 3 visits.  Of course, all came back negative.  Dr. Preston was able to rule out MS, but was not able to confirm a diagnosis.  He referred us to the Neuromuscular Center at UC Irvine Medical Center and said we need to get an appointment as soon as possible (that's never good).  In my mind, Dr. Preston had a suspicion it was ALS, but didn't want to speculate or alarm us if it wasn't.   It took us 3 months to get an appointment at UCI.