Bulbar onset

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Re: Bulbar onset

Postby misterjuanperalta on December 14th, 2014, 10:39 am

When I flick my tongue, it looks like an ALS tongue. So I guess I'm screwed. Can't show a good video.
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Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 12:16 pm

That only means it is hyperexcitable! If it starts to twitch and wiggle around the place you hit!!
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Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 12:19 pm

TwitchyDoc wrote:That only means it is hyperexcitable! If it starts to twitch and wiggle around the place you hit!!


If it does not, does that mean it's not hyperexcitable?
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Re: Bulbar onset

Postby misterjuanperalta on December 14th, 2014, 1:08 pm

Is hyperexcitable a good or bad sign?
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Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 1:19 pm

misterjuanperalta wrote:Is hyperexcitable a good or bad sign?


I think it's expected to be hyperexcitable with BFS. I know of many people on this site who can do what you just did.

However, I'm interested in knowing if not being able to induce twitches excludes hyperexcitability?
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Re: Bulbar onset

Postby misterjuanperalta on December 14th, 2014, 1:22 pm

Sometimes it's the whole tongue, not the back. Does it matter?
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Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 1:58 pm

When you flick your tongue when it is stuck out AND relaxed (must really hand freely) and there is absolutely no reaction, there is certainly no hyperexcitability or denervation. That would be the best outcome.

However, I tried on a few healthy people and 2 ouf of 4 exhibited tongue hyperexcitability. When I flick (kinda strongly, as if you flick a ball using your index finger and thumb to deliver a strong, quick blow).

When I do that on my tongue, it starts to twitch like mad for a few seconds, looking very nasty. But it is not!

If you cannot do that, you hardly have nerve hyperexcitability (at least not in the hypoglossal nerve) and you can be happy. If you can do that, you have hyperexcitability of that nerve and it means you have BFS.

So relax and stop thinking about frequency and other things..
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Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 2:06 pm

Mine twitches very much when I do this.
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Re: Bulbar onset

Postby misterjuanperalta on December 14th, 2014, 2:15 pm

In Nov 12, an EMG of tongue was clean, with present, untriggered hyperexcitability already in place. Is that enough? Should I see a neuromuscular specialist?
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Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 2:19 pm

The twitches I get when I flick my tongue is a completly different twitch then the one I usually get though. Can't feel theese at all and they're multifocal. Makes me think the other twitches I had were not true fasciculations? They were so much bigger and felt SO much. Could they have been something else? Besides, it only works sometimes. Sometimes when I flick I don't get any twitches. Good sign?

Also, another (hopefully my last) question: I had tongue twitches this summer to. Maybe 10 twitches, but this happend just one time. Then I didn't have any until september. If i count the time from this summer, this makes 6 months. After 6 months I should notice some weakness if it was ALS, right? I feel insecure about counting from this summer, since it was in september the twitches started to happen every day. What do you think? Can I count from this summer?
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Re: Bulbar onset

Postby garym on December 15th, 2014, 4:15 pm

joycecaroll wrote:Also, another (hopefully my last) question: I had tongue twitches this summer to. Maybe 10 twitches, but this happend just one time. Then I didn't have any until september. If i count the time from this summer, this makes 6 months. After 6 months I should notice some weakness if it was ALS, right? I feel insecure about counting from this summer, since it was in september the twitches started to happen every day. What do you think? Can I count from this summer?


jc,

if you had tongue twitches this summer, and they were due to als, they wouldn't have stopped and then started up again, then stopped again. Once the disease process starts in als, it doesn't stop and start. unlike with bfs, it keeps progressing until the muscle wastes away. To be sure, this can happen at very different rates, but the point is that once it starts due to als, it continues. Given the fact that you haven't reported issues with loss of daily function I believe you are just fine.

also to be clear, not one single person on this board is an expert about YOUR condition. The only expert about your condition is your doctor. This is a great place to seek support and information, but not one person here is qualified to dx you or even advise you on your specific condition. We are here to support you, and pass on the collective knowledge of all of our experiences, but unless a member is both qualified and performs an actual clinical exam on you, any information offered should be viewed as support and nothing more.

having been here for over a decade, i will offer you one last bit of advice and one last statement. 1 - do yourself a huge favor and get with a doctor to help with your anxiety. Most of us here have suffered through the extreme anxiety associated with bfs, and i can honestly say that getting it under control is the single best thing you can do for yourself. 2 - your condition seems to be no different than all the rest of us here.

Hang in there, things will get better!

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Re: Bulbar onset

Postby joycecaroll on December 16th, 2014, 2:26 pm

Thank you. I know I needed to hear that.
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Re: Bulbar onset

Postby joycecaroll on December 17th, 2014, 1:51 pm

I'm still very worried and I just need to ventilate my thoughts. Not trying to spam with questions.

So both my boyfriend and my best friend has tongue twitches too. I've seen them and they can feel them. The only difference is that mine occours everyday. As I said before it's not many a day. Today I've had three. I keep searching for something to indicate that the hyperexcitability phase would bring on more twitches than that. Also I'm thinking that maybe I induce the twitches by focusibg on my tongue.
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Re: Bulbar onset

Postby nickston on December 17th, 2014, 2:31 pm

I'm pretty sure that if I focus on a body part, I twitch more right there. The less I worry about it and focus on other things in life, the less I twitch in general and the less I twitch in that particular body part. Sometimes I can get my twitches to stop just by looking at them. Once I look away, they start again. (This isn't ALWAYS the case.) It's weird, but definitely a mind-body connection of some kind.

My advice is to focus your attention elsewhere. Find a hobby, get busy at work, do something and keep yourself and your mind occupied. I bet that after a couple weeks the twitching in that body part will have reduced significantly. The trick is keeping your mind occupied and not letting your thoughts drift to twitching.
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Re: Bulbar onset

Postby joycecaroll on December 17th, 2014, 2:39 pm

Thank you so much :) You're absolutley right.i just can't shake this anxiety. Isn't there anyone who knows more about the hyperexcitability phase?
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Re: Bulbar onset

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