Strange symptom - Bulbar ALS fear

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Strange symptom - Bulbar ALS fear

Postby TwitchyPandora on May 10th, 2013, 7:31 pm

I have had all over body twitching for a few years now. I have been the the Neuro, have had clean limb EMGS, and have been cleared of anything sinister for now.

But alas, I have also been getting 'bulbar' symptoms...

I mentioned on my last Neuro visit 2 months ago that I have been having swallowing issues (I have GERD, which can cause that, and he knew that), new neck twitches and lip twitches as well as feeling as if my soft palate is weak. He simply stated that since I have no chewing issues, and no speech issues, that he saw no reason to check for 'bulbar' symptoms. He didn't even have me open my mouth!

I have a question which will be hard to describe, but I will try:

Have you even felt as if your palate 'closed up' on you when exhaling out your nose? Like your nose isn't stuffed up, and you can breathe out it as far as respiratory expiration, but it feels as if my palate slams shut and blocks my nasopharynx area. And the harder you exhale, the more it blocks it. This is intermittent at this time. I know this happens to people when laying down, and it causes sleep apnea (I don't think I have that), but this happens when I am awake. I know I need to see an ENT, but I just wanted to run it past any of you to see if it has happened to anyone here because I know others here have had their share of perceived bulbar issues as well, so wanted to see if we have similar things happening. I don't have a nasally voice and my palate seems to seal off properly when I drink, etc.
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Re: Strange symptom - Bulbar ALS fear

Postby TwitchyMark on May 10th, 2013, 8:18 pm

I have had weird feelings like this with post nasal drip. Maybe your soft palate is inflamed due to allergies?
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Re: Strange symptom - Bulbar ALS fear

Postby TwitchyPandora on May 10th, 2013, 8:26 pm

Yes, right now I have terrible post-nasal drip. It does feel like it is connected somehow because it is like a snorty-snoring feeling.

I have had allergies my whole life but this has just started recently. Maybe I am just getting old.
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Re: Strange symptom - Bulbar ALS fear

Postby TwitchyMark on May 10th, 2013, 9:12 pm

I know, very annoying, huh? BTW, I had facial/neck twitching, a numb tongue on left side, tongue twitching (or what felt like it), numbness on left side of my face, hoarseness and terrible trouble swallowing that subsided and came back worse a few weeks later. And, nope, I don't have GERD. All that has gone away apart from the occasional twitch on my face. I do still get a feeling of reduced swallowing power in the evening but not the complete shutdown that I had before. I was ordering cases of Ensure for a while to get the calories I needed daily. What a trip. Just put the B word out of your mind. No symptoms are any disease in and of themselves unless you have that confirmed diagnosis.

Have a great weekend...
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Re: Strange symptom - Bulbar ALS fear

Postby TwitchyPandora on May 10th, 2013, 9:59 pm

Thanks for the response, Mark. My swallowing issue comes and goes too. I guess I found something new to focus on now. I just want it all out of my mind altogether!

You have a great weekend too.

PS: I have anxiety issues and wonder if that is making things dis-proportionate in my mind when they happen.
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Re: Strange symptom - Bulbar ALS fear

Postby TwitchyMark on May 10th, 2013, 11:36 pm

Yes, I think the anxiety definitely does that. I never had a panic attack until all this started for me. Luckily, it was the one and only. But it prompted me to admit myself to the ER. I was actually already going there to pick up my father. For reasons I'll probably never know, my legs started to feel really funny.. weak and spastic. Then my legs felt like I was losing the use of them or they were falling asleep. I was driving and could hardly depress the gas pedal. My mind turned it all into ALS weakness. I really should have pulled over. That 20 minute drive was the longest of my life. I left the ER that night with a valium prescription and sudden acquaintance with my own mortality. And I NEVER thought it could happen to me. So I know first hand the power of the mind. But we can learn to control how it affects us.
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Re: Strange symptom - Bulbar ALS fear

Postby mwagner on May 11th, 2013, 11:19 am

FYI - I have had a lot of facial twitching the past few months (new to me - since this is my second year into all of this). I got worried and looked up which nerve innervates the lips (where I twitch the most), and it's not the bulbar nerve, it's the facial nerve. Which also handles the eye twitching, ear drum twitching, etc. I also have neck twitches once in a while, but I have twitches pretty much everywhere once in a while.

TwitchyDoc might get me on this, since he knows more about all of this.

The facial nerve can get irritated for so many reasons, and the number one reason it seems is stress (like eye twitching). For me, I have terrible TMJ along with really bad bruxism, so I'm suspecting it could be interrelated somehow. I did see on some site that TMJ issues can affect your facial nerve. Not sure if that's true or not, but for anyone who has TMJ, it kind of makes sense.
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Re: Strange symptom - Bulbar ALS fear

Postby TwitchyPandora on May 12th, 2013, 7:03 am

My concern isn't about the facial twitching or any of the twitching.

My main question was asking if anyone else has felt as if their soft palate is loose and blocks their nose when exhaling out their nose. I think it is similar to what happens to people during sleep apnea, only it happens to me when I am awake, if I breathe out my nose I can feel it like a snorty feeling and if I breathe harder out my nose, it completely blocks the exhale so I have to exhale out of my mouth instead. It is definatly my soft palate jumping up and sealing against my throat, and cutting off the air going from my lungs to my nose. Normally when you breathe through your nose, your palate stays hanging down so the air can take the path from lungs to going out the nose. However, it seems that my palate is jumping up and sealing off the flow to the nose, so I have to breathe out my mouth instead. This is a new occurance after having swallowing issues, so that is what is generating this fear.

Not sure if this is a palatial weakness or not. Neuro didn't even want to bother to look and I guess that is because my speech is fine and if my palate was truly weak, I would sound nasally.

Just yet another fear to add to my basket. Ugh. Once I have insurance again I will go to see an ENT doctor. I was just asking here to see if anyone else has had this experience. It doesn't happen all the time, but it is occurring more and more in the past month.
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Re: Strange symptom - Bulbar ALS fear

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