Fear of Bulbar! Please help

NervousNick9

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Hello All,

I am a 26 year old male, who may just need a little reassurance. I know that at the age of 26 it is very rare as stated in the Welcome Post, but as most of you know its pretty hard to shake the feeling.

I first came to this sight a few weeks ago as I was afraid of the worst, which was probably caused by Dr. Google. In June 2021 I started noticing twitching throughout my body & now what I believe to have been perceived weakens. I had my first EMG 2 weeks ago to test for limb onset & a physical workup, which my neurologist said all looks perfectly fine. Right as we were getting done, I totally forgot to mention my "Bulbar" issues I was also having. Which was crazy because it was probably my most annoying symptoms. He looked at my tongue while out & at rest and said there definitely is twitching/tremor there but that he's not even gonna bother to do more poking with the EMG as I would have slurred speech of some sort by now. Also, I believe I have read that Bulbar onset it rarer than limbs. So with my age & that, he said it was very unlikely.

I was hoping I could list my current symptoms that have been going on for 3 months now & see if anyone thinks it could be the all sinister. My symptoms are, twitching predominantly on the right side of my face (eyelid, jaw & full tongue). It seems my jaw gets tired quickly, so "weakening" has definitely been on my mind and scaring me half to death. I get a clicking noise in my right side of the jaw every so often when I open or move it. It also does seem that my right cheek is thinner than my left, which my GF has confirmed but not sure if it's always been like that. My right nostril has been completely clogged for most of the 3 months & what seems to be post nasal drip? Pain in the throat especially when pressure to it, mostly on the right side as well. And lastly the nagging throat tightness feeling for 3 months straight. I can swallow pretty much perfectly, sometimes a cough as it went down the wrong pipe. I do also get the occasional noises from my throat like air bubbles or liquids are coming out when at rest.

Does any of this sound like something I should be worried about & should I push for another EMG to test for Bulbar. Or since I already had a full limbs EMG (3 hours) with twitching, it would have maybe been noticed? I do have a follow up in mid October, so I plan on getting my questions in there as well. Any responses would greatly be appreciated.

I would like to add that at the same time I was also diagnosed with Celiac Disease, but was told by my neuro that it rarely causes any type of these issues. My throat problems I hope are just GERD maybe. But again thank you for any responses.

Thank you,
 

ShiftKicker

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Hi Nick-

If you could make sure to read this: Read Before Posting first.

It sounds like you're already under the care of a neurologist- who has clearly stated he saw no sign of ALS. If you are still concerned by your next appointment you can definitely mention your worries to the neurologist again to see what they think. However, I doubt anyone here would disagree with your neuro about it not looking like ALS. You talk about a stuffy nose and odd feelings in your throat, but that is not how ALS is expressed.

It sounds like you would need to address your concerns with your family doctor and not with a neurologist in order to track down the cause of your discomfort.

Take care
 

affected

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The great news is that you are not describing bulbar onset in the least. Your clean EMG would have shown a result even without testing the bulbar area.
Please take your concerns back to your doctor for best advice on what is next.
 

NervousNick9

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Thank you both, I really do appreciate all the work you guys do on this site. It definitely helps people who are new to some symptoms & google makes you think the worst immediately. I am not sure if this post will remain active/open to post, but I do have an ENT appointment Thursday morning. So I would like to update this for anyone who is like me looking for answers! Could give them a peace of mind when Dr. Google sends them here with the 1st link.

Thanks again & I hope everyone the best
 

NervousNick9

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Hello,

So I returned from my ENT appointment, and the doctor noticed possibly atrophy on the left side of my tongue? I was assuming it was just from my biting it while sleeping, which he says is possible but being on one side & not having many teeth indents he wants me to get a second opinion. My question is, as stated in the “Read before posting” & many other users. Wouldn’t I be experiencing slurred speech of some sort if this was due to ALS? At this time I have non stop fasciculation's & my tongue,throat,jaw are sore but could just be from my anxiety and sticking my tongue out & wiggling it every 10 minutes. Any additional information will help, while I await my follow up. As previously mentioned I did get a full limb EMG, but not bulbar. The ENTs words were “well in today’s day & age anything can happen”.

thank you
 

Clearwater AL

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Nick, let’s review a few key sentences from your Thread and some of
the replies from our very ALS knowledgeable members and you.

“…neurologist- who has clearly stated he saw no sign of ALS.”

“Your clean EMG would have shown a result even without testing the bulbar
area.”

“He looked at my tongue while out & at rest and said there definitely is
twitching/tremor there but that he's not even gonna bother to do more poking"
with the EMG as I would have slurred speech of some sort by now.”

“As previously mentioned I did get a full limb EMG, but not bulbar.”

“Your clean EMG would have shown a result even without testing the bulbar area.”

“So I would like to update this for anyone who is like me looking for answers! Could
give them a peace of mind when Dr. Google sends them here with the 1st link.”

Now, another post with another question… what will it take to convince you –
you don’t have ALS.
 

NervousNick9

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I just want to state that I am thankful for the replies & really don't want to seem like that person I see on this board, which posts anytime a new symptom comes up. I have a follow up with my neurologist on the 17th, where I definitely will be going over any of my concerns. I know it may come across as disrespectful to some people since I do not seem to be presenting tell tale symptoms & might just be anxiety but I just wanted to share my consistent symptoms over the last month or so.

As previously mentioned, I currently have a non stop twitch in tongue which never stops. This I believe has lead me to constantly bite it while sleeping as the sides of my tongue are scalloped & raw. My right eyelid is hard to explain but it feels tight or has a weird feeling all the time & twitches more times than not. I have also developed a constant twitch in the front of my neck (throat area) which is present pretty much 24/7 & feels to be making the muscles sore. I have also developed a neck pain in the back which usually radiates to a head ache. I know people say pain is not a symptom but could weakness of the neck create a pain of some sort? My right cheek is also a lot thinner, with more of an indent than my left. Which also does twitch but not as often as the others. To sum it up, my whole right side from neck to eye feels tighter/weaker on the right side.

I have read the welcome posts/read before posting. But as many know, the internet does post a lot of information that can swallow someone up. Again I am not trying to be rude or take away from people that may actually need assistance but was hoping to see if anyone had any insight to these symptoms. Any response would be greatly appreciated while I await my neurologist in a little over a week.

Thank you again.
 

Bestfriends14

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No, still not describing it. You'll need to bring any further questions to your GP, as this is a forum that deals only with ALS, and you're asking general health questions. You're sticking your tongue out every 10 minutes and wiggling it? Seriously?

Please come back and update after the 17th. Until then, perhaps going out for walks or giving back to those less fortunate will take your mind off of whatever may be ailing you.

Again, until then...
 

affected

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Might I suggest that if you read things elsewhere that differ from our sticky, contact those sources to discuss your concerns.
We have said so clearly that twitching means nothing. I can also say that a scalloped tongue is not ALS, nor is a tight eyelid.

ALS is a disease in the brain and it prevents the muscle getting the signal to move.
Please return to your doctor if you can't wait to discuss things with the upcoming neurologist appointment as they can examine you and discuss what you feel are new things happening as they have a baseline to work from.
All the best, I hope you will believe the neurologist.
 

lgelb

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I'd film your sleep. This sounds like a positioning issue on your R side. Allergies/GERD may contribute, so you can also listen to your breathing in sleep and/or try a nasal steroid. You can show any concerning film to a doc as regards a possible sleep study, and also check in with your dentist about a night guard.
 
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