I went to see my "neuromuscular specialist". He was listed as the only one in my insurance company's info. When I scheduled my appointment, I explained my concerns. Fasciculations, swallowing problems, hand tremors, perceived weakness, etc. noting that the swallowing problems were my most concerning. They marked it down.
So, after a two month wait for that appointment and a 5 1/2 hour drive through the Appalachians in the snow, I began discussing my concerns with him, and he kindly notified me that he didn't understand why my insurance company had him filed as such, since his specialty is, in fact, osteopathy. He explained that he would do a neurological exam on me, as he has studied neurology, just not his specialty. Once again, brisk reflexes in my knees were noted. Happily, during THIS exam, he found no clonus. The only abnormality that he found in the clinical exam were the brisk knees. He stated that he believes the pain in my hips is bursitis.
So, the swallowing issue remains a mystery and a concern to me. It was fairly disheartening, after a 2 month wait, to walk out with not much new insight. I realize that 7 1/2 months of swallowing difficulty with the absence of voice or speech problems is in my favor as far as my ALS anxiety is concerned, but the issue is still there and the cause remains a mystery to me. As I have read, ALS is about how things fail, not how they feel. This issue is just a very difficult one for me to shake. For several months, my throat has felt constantly tight or strained. I'm not entirely sure how to describe it. My ENT suggest globus, but it did not show up on either barium swallow, and Ativan, while suppressing my anxiety, is not suppressing the feeling.
The doctor is referring me on to WVU and said that he will try to get me in as soon as possible. With it being the holidays right now, I'm not sure when I can expect to hear back about my appointment, but for now, it is just more of the waiting game. Not much new to add. Just fairly disheartened after this visit.