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This madness has to end. It just has to.

PostPosted: December 30th, 2015, 4:18 pm
by Scaredlin
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 A** 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 A** 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)


Re: This madness has to end. It just has to.

PostPosted: December 30th, 2015, 4:57 pm
by leroyb
Your story is missing the key things that someone with bulbar onset als SLOW OR FAST would include and nope, I won't be telling you what they are.

Re: This madness has to end. It just has to.

PostPosted: December 30th, 2015, 5:41 pm
by Scaredlin

Re: This madness has to end. It just has to.

PostPosted: December 30th, 2015, 6:06 pm
by Bibi
I feel with You , i have Many similar issues , dry burning throath and tounge , had a gastroscopy in september which showed hiatal Hernie and gastritis , i have taken omeprazole , pantoprazole ( still am ) lansoprazole , nothing helps . Saw an ENT 3 weeks ago and i am going back to him 6/1 .but he saw no signes of acid ) i feel i lisps When i talks and The lasts days i have some pAinfull spasms in throath . I also have issues with my legs , i have weak gluteal muscles ( and pain in my hips ) and try to do some training now. I had one clean EMG in september 2014 , 5 months after twitching started . I have been to 3 neuros and They tell me i have brisk reflexes but dont Think it is Als.. Next neuro appointment is in june 2016 .
I feel that thing progresses and i am scared . My lifequality is low because off The throath and mouth issues and i really hope that The ENT Will help me to find out what is going on.
I hope you Will post after next appointment !