Bulbar Onset - My Story

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asmanxiousmind

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HiWell, after reading many posts. I know I'm not alone in going from limb-onset to bulbar-onset. The bulbar panic began about 2 months ago when I was eating some chicken and I couldn't get it down. Subsequently, this dysphagia has been ongoing since then. I dind it difficult to get food down. Subsequent to this, I notice intermittent pain, "zaps" tickling on the sides and fluttering on my tongue. It appears I have some "dents" on the left lateral side of my tongue. My jaw and face have been twitching with saw jaw pain. What started happened 6 days ago while I was reading, I had a strange kind of involuntar "half-swallow" at the back of my throat. Maybe its a spasm but its been happening every day which has me really worried. The best way I can describe it is when you're at the dentist with instruments in your mouth and you need to swallow but you can't, its almost like the back of your throat and tongue move but yyou don't swallow. Except for me, it is involuntary. It happens out of the blue. Its freaking me out
 
First of all, as you already know you are not alone with this "phase" of ALS fear. It never ceases to amaze me how people can fall victim to fears of bulbar onset so easily. Just the idea that NONE of these topics would exist if bulbar onset didn't exist is quite funny. I have read many, many of these posts like you probably have at this point, and I can say that nothing you presented should be worrisome or is indicative of anything sinster. Remember that the more you examine your tongue/throat, play with it, strenth test it, and THINK about it the more you will have symptoms most likely. Its a viscous cycle and one I hope you can pull yourself out of soon. :)
 
I could have written this post a few weeks back, from the "dents" to the swallowing problems...! I even got the cheek spasms (+ tongue and lip twitches), everything. I was literally terrified... I was even feeling a strange pressure around my neck, but now it's all gone (except for the occasional tongue-lip-cheek twitches/spams). At that time, when I was trying to swallow, it really felt as if I had previously taken a cepacol (it's an analgesic for throat pain caused by a cold virus). Johnny is so right, if there was no such thing as bulbar onset, I'm 100% sure we would not even notice half of our mouth/face symptoms.
 
How funny you have these involuntary swallowing stuff too..it is soooooooooo weird !!! Yes, I have this, I have been describing it as some kind of twitch that wants to "force" me into a swallow, just out of the blue. I can tell you that -for me-this is as well as all my swallowing issues, very very much related to my stress level.
 
By the way, eve you do not like my anxiety theory: I am just doing a lot of research on BFS for my Emilyomouse wiki article, and not awnted to hide this article:nvolvement of the esophagus in the cramp-fasciculation syndrome, Braune et al,.muscle and nerve,1998 Jun;21(6):802-4.which says....it is normal that BFS/BCFS also affects the throat muscles and swallowng process.
 
Thank you all for your insight. As always, you are greatChrissi, your description of this involuntary "swallow" does sound like what I have-as if I'm being forced to swallow. I have a question about tongue "movement". When I stick my tongue out, but don't "tighten" it, the middle of my tongue quivers/flutters/moves the whole time I'm llooking at it. I don't know what is "normal" anymore guys. I've read this is normal, also that it is something to be worried about.
 
You can only see fasciculations if you rest your tongue calm in your mouth ( and you know that even IF there are fasciculations, it is normal for BFS). If you stick it out, there is a very slight tension on it. A very common feature of BFS is that muscles do slightly quiver/tremor when they are tensed a very little bit. This often happens in fingers producing a slight tremor (or also strong ;) ), in legs but in many people (including me) also in the face. Some days when I smile a bit, my cheeks will start to "tremor". When I hold my jaw in a certain position, it starts to tremor so my teeth clap. And if I open my mouth to a certain degree( like for checking your tongue) my lips will get a really really strange tremor!! An also my tongue tremors in the middle when I stick it out a bit.
 
Hello,I need to say that I also have a similar issue although in my case I sometimes feel like a can't swallow. For me it has happened out of the blue. I swallow and all of the sudden it is as if I have lost coordination, or my muscles aren't doing the job naturally. Then I focus on the fact that I couldn't swallow and try and it takes two or three tries to swallow with ease. Anyway, it is among the MANY symptoms that I have had since being diagnosed with BFS that have come and gone. I hope you aren't worrying about it any longer with the various assurances that it happens a lot to us twitchers. Best,Donna
 
Thank you Donna, and thank you all. My mental health is hanging by a thread with these latest "bulbar-onset" fears. Its a wicked vicious cycle that is getting the best of me and threatening my job and my marriage.
 

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