The path to a diagnosis of ALS is not smooth and direct. There is no one test given to determine if you have it. ALS is a diagnosis by exclusion. Meaning, all other possibilities have to be ruled out with ALS being left. Family history, medical history, blood tests, genetic testing, EMG/NCV tests. All are tools used by neurologists to give you a diagnosis which may then still only be possible or probable ALS.
Around April of 2015, I finally got an appointment with a neurologist who specializes in ALS and Muscular Dystrophies. After the last few months of waiting and worrying, I will finally get some answers. This visit would initiate the barrage of testing which I mentioned earlier. Most of the testing is pretty harmless. A matter of blood draws and extensive questions regarding your health. The worst of the testing is , arguably , the EMG and NCV. These tests consist of placing large needles and electrodes in various spots on your body while running electric pulses to examine nerve health. I think most pALS would agree that it is the worst !
Unfortunately, ALS diagnosis is not typically a one and done visit for diagnosis. In most cases, it takes over a year to draw a conclusion. Including testing for other causes, neurologists look for signs of neurodegeneration over a period of time. So back to the waiting game I go as I leave the office again.
November ’15. Wife and I return to the neurologist. Our hearts pounding. Butterflies are going crazy. Six months have passed since we were last here. The doctor comes in, we speak briefly, but it’s all business today. He quickly has his fellow neurologist in training conduct the EMG/NCV tests. They don’t take very long this time. They leave the room for what seemed like an eternity. A knock on the door. The doctor comes in and takes a seat. “I’m sorry. But the tests confirm that it is ALS. “