Erica,
I think I asked this before, and don't know the answer, was an EMG done of his epiglottis itself?
Has he had a "coned down" MRI of just his brain stem. If he has not, this is something that is needed! and he needs to go to a doctor that realizes it is needed (if you get what I mean). A brain MRI is not specific enough to look at a weakness that is only coming from the bulbar cranial nerve area.
I really feel for you, the frustration and fears combined. Please try not to take this too much to heart until he sees another specialist in the neuro-,muscular field. Get another opinion. Also, the very fact alone that this doctor herself couldn't manage to have the conversation with you is just not right.
I do not want to add to your fears, but I also understand that at this point you want answers too. I had an atypical onset of bulbar palsy. The very first test that pointed toward MND was an EMG of my vocal cord muscles themselves, and it was abnormal, showing a typical pattern for ALS. BUT six months later, an EMG was performed on my limbs and my tongue, and these came back normal. During this time period I did have clinical weakness in my throat, mouth, tongue, soft palate, lips and face including eye closure. Most notably the 9th, 10th and 7th nerves. This was weakness discovered by my doctors and speech pathologists, some of which I was aware of, some not so much. My neurologist expressed surprise not only to me, but to my laryngologist that my tongue EMG was normal, because upon her exam she noted weakness and atrophy. (My other doctor told me that she'd said to her that she was "shocked") About 6 months after this EMG, another one was done of my tongue, and it did show problems by then.
I am wondering if the reason the neurologist said this to his GP, is because, she has seen other atypical patients who continued to progress,( like I did), and, more importantly, also does not see signs that would point to any other disease. Because, even though I feel I'm atypical, and am, to a degree, when I asked about other tests, muscle biopsy, lumbar puncture, etc, I was told that nothing that I describe, or my doctors note upon exam point to something that these tests would be helpful for.
I want to echo others that asked, and that is, have his doctors been notified of his hand tremor? IF its not from medication, it might be significant enough to steer them in another direction, or not.
The questions are was she thorough enough, and is she qualified enough....
I'm so sorry you did not get good news, and the way you did learn it was not what you were expecting.
((hugs))
