ListlessOne
Well-known member
So for whatever reason, this almost 2 yr vet is freaking out again. Not feeling well for two years without a clear answer, I've cycled back again. My issues are mainly throat issues (tongue spasms, twitching, palate squiggles, sore throat that NEVER leaves, stabbing throat pains, teeth tingling, etc), so I am fixated on bulbar. I had these issues as way back as January 2014, although they really didn't develop fully until March 2014. In February 2014 I had an all clear body EMG and bulbar tongue/cheek/neck and paraspinal EMG, so of course I'm convincing myself the EMG was a month "too early" maybe. The issues died down for about a good year- I had others, but not really throat related. And I went on with life. Then out of the blue I started feeling a burning nerve pain creep up the side side of my tongue, some burning throat and mouth issues, constant tonsil jabs, roof of mouth pain going into back of throat, twitching down throat, jaw pain, cheek pain. I went to a cranial nerve surgeon who diagnosed neuralgia. Why can't it end with that with me? Why can't I be satisfied? Because every day I am having the craziest pain sensations in my mouth and throat and no drugs are helping. My throat hurts when I bend over, turn my neck and is sooo sore and tired by the end of the day (but can still use it at normal strength). But generallyno pain when swallowing which is so weird. Tongue seems normal strength but does crazy things mainly when I try to fall asleep like feel its being tugged back. I feel like my lips tremble when I drink out of a cup. So here I am on the ALS express again. Another clean body EMG this week. The general Neuro I went to today (#6) would not EMG my throat, says clean clinical, no bulbar symptoms, and I need to go to a "specialist" if I want a further workup. I left disappointed and unconvinced. I just want closure on this!!!!! Luckily, he referred me to an ALS specialist at a teaching hospital who unbelievably has an opening in the next two weeks. Which is awesome but sounds like a total eternity to me. Although today's neuro said highly unlikely to be ALS b/c pain issues and length of time without voice slurring or swallowing issues (22 months). He said ALS is failing not feeling. Why am I repeating this all to you, you all know this. I feel so needy; these message boards have been so empty with those of you probably enjoying the holidays in peace and Im on a one way ticket to worrying hell again. I am now clinically depressed and no drugs are helping either my depression, anxiety or obsession. My kids and family are suffering. The Klonopin I blamed this all on last year is now my best friend b/c thats all I can do to sleep. And I did post my worries last week and many of you were kind enough to tell me how irrational I am being! I need that. Someone please slap me silly and tell me I don't have the slowest progressing case of bulbar ever. (22 months) Thanks.