After seeing the local neuro for the first time, I was very disappointed in his lack of knowledge about ALS. He did a few strength exercises and will conduct an EMG next week, but he did not impress me. For example, he said that hypereflexes are more common in als than weakened reflexes. Having read about upper and lower motor neuron areas, I know both are part of the diagnosis.
In addition, he did not share his examination findings with me. I suspect he is concerned because of my set of symptoms, but he does not want me to worry.
Of course, he said he thought that the probability I had als was very low, but that is something we have all heard before.
After reading about the complexity of an als diagnosis, I wonder how many tests I will want done. If a normal EMG is not necessarily indicative of later als, then one wonders about the practicality of having repeated tests done. Why not just wait until the diagnosis becomes apparent. I suspect if I have als, I will eventually know it because I will experience progression of symptoms. If one looks at the Escorial criteria, both the original and revised versions, for a definitive diagnosis of ALS one must have both UM and LM symptoms in 3 regions. But by then, I will certainly know I have als. I won't need a doctor to tell me. The only advantage I can see of diagnostic testing is to eliminate other possibilities, but these are not always definitive either.
I guess the question I am asking is what is the disadvantage of not doing excessive testing, even by an als expert, and allow the condition just to manifest itself?
In addition, he did not share his examination findings with me. I suspect he is concerned because of my set of symptoms, but he does not want me to worry.
Of course, he said he thought that the probability I had als was very low, but that is something we have all heard before.
After reading about the complexity of an als diagnosis, I wonder how many tests I will want done. If a normal EMG is not necessarily indicative of later als, then one wonders about the practicality of having repeated tests done. Why not just wait until the diagnosis becomes apparent. I suspect if I have als, I will eventually know it because I will experience progression of symptoms. If one looks at the Escorial criteria, both the original and revised versions, for a definitive diagnosis of ALS one must have both UM and LM symptoms in 3 regions. But by then, I will certainly know I have als. I won't need a doctor to tell me. The only advantage I can see of diagnostic testing is to eliminate other possibilities, but these are not always definitive either.
I guess the question I am asking is what is the disadvantage of not doing excessive testing, even by an als expert, and allow the condition just to manifest itself?