OH, dear. I recently came out of this swing and I can tell you the ALS beast is bad. Especially the bulbar fears. I saw two neuros including a neuromuscular specialist who said not ALS. I even convinced them to do a body EMG. No ALS. HOwever, I was having weird mouth sensations, tongue pulling, burning and involuntary swallowing (would wake me up in the morning and the reflex kicked in). So I went to A THIRD neurologist who I asked to give me a tongue EMG right then and there. Poor guy. I literally took advantage of him with my anxiety. We HA people go to extreme lengths to get the reassurance we need. NORMAL.
YOu know what. I went to a FOURTH neurologist, who repeated the EMGS and said "small fiber neuropathy." Guess what. He didnt' even want to look at my tongue. So sure and confident. Didn't want to even hear about my tongue complaints. You know why -b/c bulbar ALS presents with slurring and you can't swallow even water without it dribbling and going all over. A specialist can tell bulbar within seconds of your initial conversation and complaints.
That still didn't help me. Because I still have the burning mouth, tongue, tonsil, jaw, ear pain in the trigeminal nerve distribution, instead of listening to a SPECIALIST who told me whats causing it, I am googling tumors, aneurysm, etc. EVEN THOUGH I HAD 3 BRAIN MRIS.
I tell you this b/c we are all very very sick with this HA. I see a psych every week because I cannot emerge from what has been 9 months of HELL. He tells me that neuro symptoms share the same pathway with psych symptoms so thats why a lot of us have orofacial pain, fibro, burning, twitching, etc. You could just have an aggravated nerve in the facial region from stress, dental, of BFS (see below) etc.
I just feel so bad for you b/c I was at my WORST in the ALS phase and although not cured, I would not want to relieve Christmas 2013 ever again.
YOU DO NOT HAVE BULBAR. Google benign fasciiculation syndrome (BFS)and go to that forum and you will see a TON of anxious worriers like you with the same fear. I was one of them months ago.