ARS06, if the 'she' you cite in your last post was me, then yes, I had weakness from the outset. It was my voice and breathing affected first.
Wright was right in that I am extremely rare in presentation. Even Patricia is more common in that it was her speech affected first, whereas with me it was my voice. When we say rare, its just that. I have been the subject of staff meetings at Johns Hopkins.
The ONLY reason I got involved with this thread was to clarify that 'never's' and 'alway's don't exist in this world. But, to simplify what I related is a much bigger distortion than a blanket statement that EMG has to be abnormal from the outset.
Ted's point about the skill of the Neuro conducting and interpreting the EMG is excellent, and very important.
What Pat said, and also hjlindley, is very important. In my own experience, I had weakness, and when my first abnormal EMG (bulbar) was diagnostic for motor neuron disease, it wasn't like any of my doctors thought it was conclusive enough to say that was what was wrong. None of them even brought MND up for a couple of more months.
Did everyone who's worried catch what I just wrote? I'll say it again: Even with dirty bulbar EMG not a single doctor said to me, "that's it, you've got MND, or ALS". Read it again if you didn't focus on what I said. Its that important.
The first time it was brought up was during a phone conversation with my laryngologist who said it was my cranial nerves responsible for problem with voice. Testing in the next month or so confirmed I also had problems swallowing that I was not consciously aware of yet—which brings me to my next point: perception of problems with speech and/or voice that no one else other than the person experiencing it notices.
I absolutely could not tell my voice was 'off'. People would ask me if I had a cold, or if they'd wakened me (phone call) I worked odd hours, so that was a normal assumption and I didn't think anything of it. I had this one elderly neighbor that was so sweet to me, in fact, I think he was sweet on me, lol, and every time he'd see me, he'd ask me if I was sure I wasn't sick, because something was wrong with my voice. It was months after that before I could hear it.
If you think you sound nasally, or whatever, have someone record you voice while you're unaware, and play it back to compare with an older recording such as an answering machine message that is in your voice, or you greeting on your cell phone.
MND is insidious. It sneaks up on a person. If a person has an aggressive form of it, to where the onset is not slow and vague, then, there would be clear cut signs for any doctor to see.
as ARS06 pointed out, TRfogey and Wright always emphasize the importance of clinical weakness. ALS is, after all about weakness that leads to eventual paralysis. Its not about twitching. Its not about waking up with a sore throat, or sudden episodes of tingling. (just random examples)
I do believe, just from what I've read over the years on this forum, that people with substantial upper as well as lower motor dysfunction experience a more rapid progression, than those who are mostly one or the other. Pure forms of that being PLS and PMA. I'm not saying this as gospel, just seems to be the pattern I myself have seen.
BTW, Wright, no I don't think muscles for breathing were ever EMG'd for me. I only remember arms and legs and of course bulbar.