Hi, if youve been watching the board you can see my anxiety has pretty much dominated the board throughout the holiday season. Im a 2 yr veteran. Had a clean EMG and bulbar EMG at the beginning of this nightmare.
I am "throat" girl - not a nice name, I know
I do twitch, but my main issues are all sorts of weird cranial sensations/spasms/tingling/burning in my throat, mouth, roof of mouth, tonsils, etc. Sore throat all the time but not when swallowing. Its weird. And hurts after I talk alot. I used to have the burning muscle body stuff but that resolved
Anyway, I was a total loon over the holidays with muscle cramping in my throat and a tickle in my throat that of course I read was common with you know what. I was able to get a full body EMG done before thanksgiving but insurance would not cover the bulbar b/c my neuro didn't really write up a convincing referral for it (didnt think I needed it). I literally had myself in a frenzy, crying that I wasn't getting to see my kids grow up, etc. It was a mess. I don't think mess even covers it. The holidays were a disaster and I actually took a leave of absence from work for two months. All of this even knowing that I've had these symptoms for two years and bulbar would have taken its toll on me already. After New Years I finally found a neuro who would write the script for a bulbar EMG, and when he couldnt do it right away, I got the quickest apptmt I could somewhere else at a large hospital with a different doctor. I lost 10 lbs on a tiny frame (120) during this horrible, frenetic worrying process.
This is a warning to all. Don't go down this road. I plunked down the money outright to pay for the bulbar emg that insurance denied. Good, hard earned lots and lots and lots of money that could have gone for a vacation or decorating a room or fed a lot of poor people for an EMG that took about 5 minutes because of this outrageous mental disease that we have characterized by our inability to let it go. Of course the EMG was totally clean and then I asked him if a bulbar covered my vocal cords bc maybe its in there and not my tongue or throat and he said "don't you EVER let anyone stick you with an EMG needle in a vocal chord." Moreover, even before he did the EMG, he said there is no way in hell you have it you aren't even remotely in the ballpark symptomatically at all.
Of course as these things go, I would love to know whats causing this hell in my throat. Ive been scoped by an ENT 4 times and Im not really a GERD girl so now Im worrying that some other neuro disease is atrophying my throat because of weird throat sleep issues and the sudden development of obstructive sleep apnea.
I can't live like this anymore. Its always onto something else. I have an appointment with a cranial neurologist in two weeks. Now thats at least a sensible start and it doesn't scare me at all. Its a rationale choice and no fear attached. It has been suggested that what I am feeling is some type of throat neuralgia (I did have open heart surgery where the ventilator was literally ripped out of my throat seven years ago, resulting in another operation to fix my vocal chords later on, so that darn well can be it).
Anyway, its great news and I can't thank God enough, but for me always tempered by whats lurking around the corner. Im working with someone on changing that.
Believe your neuros. Stop googling. Enjoy life. If "throat girl" doesnt have bulbar, you sure as hell don't!