I read about a woman here in my town who was also diagnosed with bulbar als. Her story is very similar to Pat's story. She started with bulbar symptoms about 7 years before her diagnosis (slurred speech, I believe). Initially, she did not know what it was, so she went to various doctors. When she saw the ENT, he instantly said it was ALS. Perhaps, those of us who have bulbar symptoms should just go the ENT doctor and they can diagnose. In my case, I am fairly certain that if I went to an ENT specialist, the doctor would see the atrophy, and along with the slurred speech I am having and excess salivation, what else could it be?
Since EMGs are not definitive, is any clinical test definitve? if not, it seems as though we waste much money trying to seek a diagnosis. After all, there is no cure, so we seek a diagnosis only to relieve our anxiety. Why not wait until it's obvious, if we can live with the anxiety? I have more than the requisite upper and lower motor symptoms which would qualify me for the diagnosis, in addition I have bulbar symptoms.
With respect to fasciculations, my situation is also different from what some of you describe above. I don't recall any constant fasciculations on my right arm, and that is the arm that is weak! How does one explain that? Now, I have fasciculations bodywise, but also some that are localized and constant (calf muscles, mostly my right, but also my left). It is all so disconcerting because of the variation in presenting sympotms and progression.
Since EMGs are not definitive, is any clinical test definitve? if not, it seems as though we waste much money trying to seek a diagnosis. After all, there is no cure, so we seek a diagnosis only to relieve our anxiety. Why not wait until it's obvious, if we can live with the anxiety? I have more than the requisite upper and lower motor symptoms which would qualify me for the diagnosis, in addition I have bulbar symptoms.
With respect to fasciculations, my situation is also different from what some of you describe above. I don't recall any constant fasciculations on my right arm, and that is the arm that is weak! How does one explain that? Now, I have fasciculations bodywise, but also some that are localized and constant (calf muscles, mostly my right, but also my left). It is all so disconcerting because of the variation in presenting sympotms and progression.