What Is ALS's 'Mystery Phase'?

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Yulia is SO right about this! Thank you, Yulia, for being here. Joyce get up and take those medications, it is absolutely a reason you are feeling worse and worse. Swallow. Drink plenty of water today, you are probably dehydrated also. Perceived perceived perceived swallowing difficulties are common with bfs also. Get to class and try to have a good day - tell yourself you have all the time you need to worry about this after class IF you still think you need to.
 
Okay I tried to drink a cup of coffee. Every time I swallow I get a sensation in my nose like there is a little bit of liquid there. I'm thinking: well, at first the weakness would be really subtle, so this is probably how it would manifest.
 
Nope/ you just do not have enough muscles to compensate weakness here so if it comes - it comes clear.many fellows here complain for this feeling of a bit of liquid going to the nose. I personally felt that too.
 
I woke up today and drank a cup of coffee while googling "normal uvula". Everytime I swallowed the coffee I felt like little bit came up my nose. Sat there for a good couple of hours saying "ah" while looking in a pocket mirror to see if the uvula was straight and if my soft palate rised in a good manner. Of course I wasn't satisfied. The uvula didn't really go up while I was saying "ah" and it also turns to the left.Oh! And I noticed ons side of my tongue is smaller than the other.I emailed TwitchyMD a few videos of my uvula and also showed him how it lookes when I try to gag. Just normal stuff to send people you've never met, I guess.Than my roomate came home and came in to the living room just staring at me crying and going "aaah" "AAAH" in the mirror.What are you up to? She asked.Oh, just checking to see if my soft palate is paralyzed. Have been to scared to swallow anything the last few days, you know. Need less to say this is a new low. I've gone crazy on a whole new level.
 
Oh my God, I'm freaking out. Since yesterday the fasciculations on my tongue are constant and all over. I feel them every second. What do I do?They don't stop if I use my tongue either. Is that typical for ALS? That they don't stop even when muscle is not relaxed?
 
Joyce, once again, there was surely no paralysis in your soft palate! From the videos you sent me, all movements were symmetric, no drooping or dragging of one side. You were satisfied and relieved, what happened? I believe you focus too much on possible nasal regurgitation and that is why you feel liquid up in your nasal cavity, possibly because of changed breathing pattern, selective perception and normal motility...As for your non stop tongue fasciculations, I am nearly sure these are normal movements. You are under a lot of stress and possibly just perceive more the movements.
 
Help!! For the last few days everytime I swallow my medicine it get's stuck in my throat. Not like I choke, but it just feels uncomfortable. Even if I drink plenty of water the pills doesn't go down completely. Is this a a symptom of bulbar?
 
Nope, and it did not stuck in your throat. it is just the throat edema, most probably due to GERD, and it is well known to make a feeling of object (which in fact is passed) is stuck. The feeling might last for hours. Just let it go. I survived numberless issues like that, so it is not worth of any panick. Not a pleasant experience, but not a fatal too.You practically answered your own question saying "even if I drink a plenty of water" :) should it be bulbar palsy, hardly you could drink a plenty of it :))))
 
Nope it was just tongue buzzing, most frequently caused by jaw muscle tension (and this is most ptobably caused by nervousiness)
 
Wen't do a GP today. Fresh from med school. She gave me clinical and said it was ok, but she clearly saw twitches on my tonuge. She got worried and referred me to a neuro. Again. Said it might take a few months before I get an appt. I asked her what she saw, if it really was fasciculations. She said she saw twitches. Now I'm so scared. I thought I just had them when I felt them, but now I'm thinking I have them all the time and don't feel them.
 
I completely agree with Gary. My GP doesn't even know what BFS is. I educated him along with several other doctors along the way. Your tongue is a muscle, it will twitch if you have BFS at some point if you know it or not. You may have actual tongue fasciculations or spasms. Big deal. If they were picked up on an EMG I may be impressed. What an actual trained neuro is looking for is visible fibrillations on your tongue. Its the only muscle where fibrillations are visible. Don't ask me what they look like, only a trained professional can answer that. You most likely do not have that. It is very, very rare. What I can tell you is that the fascics and twitching on your tongue is what has been described here by numerous other folks with BFS.
 
Thank you guys. For the last couple of days my voice has been cracking a lot and I'm clearing my throat all the time. Freaks me out. What is hoarseness like in ALS? I don't have a cold or anything.
 
Joyce, you can always go to an ENT and get it checked. The hoarseness in ALS usually results from pooling of the saliva and/or food remains in the piriform recesses and the subsequent overflowing into the vocal chords. An ENT doctor can evaluate these recesses along with vocal cord movement and can tell you immediately if there is something wrong.I am sure he will not find anything.
 
I have an appt with a neuro in a few weeks, and I'll probably get an emg as well. So I think I'll just hang on untill then. The hoarsness is very, very mild. Would probably not notice it if I wasn't obsessing.The way you describe the hoarsness I get the feeling it's associated with swallowing difficulties? Don't have that.
 
Throat clearing is a very non-specific symptom, associated with many conditions (allergies, post-nasal drip....). In ALS, it represents the subclinical swallowing impairment, typically caused by the base of the tongue weakness and lodging secretions in the piriform recesses.I would say you are just hyper-sensitive and your voice is normal, affected only by anxiety.Swallowing issues are uncommon as a first symptom of bulbar ALS (only in 1 out of 8 patients), dysartria is. Typically, dysartria parallels dysphagia.I think your doctor is being responsible when she sends you for an EMG beacuse of tongue fasciculations but I do suspect you have tongue tremor and your GP just confused that for fasciculation based on your history. You would not be the first one here, I remember another case where GP said fasciculations but neuro disagreed.
 

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