Hello Again!

[Marlene3460]

So ever since the last time I was here and asked for some advice some new things have been going on...my tongue is still having fasciculation's but now I can feel them way in the back of my tongue to the point it's in my throat it doesn't feel like a twitch it's almost like a pulling tingling sensation I always have had an increase in facial twitching especially in my lips and more recently my lip on one side feel almost like it can't move and lopsided. I'm just wondering if this sounds familiar to anyone here. Ii understand you are not doctors just looking for some advice or insight thanks so much! Big hugs to you all!

 

[trfogey]

Have you ever been to the aboutBFS dot com website? Lots of folks over there have weird tongue fasciculations like that.

 

[Marlene3460]

No I have never visited that site, but I am about to right now. I'm just trying to stay calm about it all and not read any negative things. Don't want my mind to began to create symptoms. Thank you so much for the information

 

[alex scared]

hello again marlene . . A few points to hopefully reassure you . . fasciculation of any sort gets a bad press , it usually leads the person to seek answers on the web and 9/10 times the dreaded letters als appear . . This is crazy really because fasciculation of any type (feet butt bicep tongue ) means nothing unless accompanied with weakness and atrophy . . Its far more likely to be benign fasciculation syndrome . Tongue fasciculatin in particular gets peoples fear going through the roof when in fact its a muscle just like any other and can fasciculate with the best of them . In the scenario of bulbar onset i am lead to believe that that as in lima onset the fasciculation tends to appear (if ever ) when the affected muscles are seriously weakened ie tongue weakened causing slurred speech or swallowing difficulty . .i am yet to hear of anyone whose bulbar onset started with tongue fasciculation . . I talk with some experience of tongue issues that started 6 months ago . . To cut a long story short my tongue started twitchin after some mildly slurred speech . . Had an emg(of the bulbar region and it came back clear . . I hope some of this reassures you. I wish you good luck and god bless . . Alex

 

[Bliz]

Marlene, with BFS there is negative stuff, you do not need to worry by visiting that site. Its just syndrome of benign fasciculations. Facial ones are pretty common, tongue ones not so common but exist. As Alex said, its just a muscle as is your biceps, there is no neurological explanation why tongue twitch should be considered as not benign,at least no specialiast was able to tell me.
If you have no weakness (rolling lips symmetricaly etc.), I would not worry much but you said there is ALS in your family so just get an EMG and precise clinical exam.

 

[Bliz]

Err, sorry! In my previous post there should be "With BFS there is NO negative"... Silly I cannot edit.

 

[Marlene3460]

hello again marlene . . A few points to hopefully reassure you . . fasciculation of any sort gets a bad press , it usually leads the person to seek answers on the web and 9/10 times the dreaded letters als appear . . This is crazy really because fasciculation of any type (feet butt bicep tongue ) means nothing unless accompanied with weakness and atrophy . . Its far more likely to be benign fasciculation syndrome . Tongue fasciculatin in particular gets peoples fear going through the roof when in fact its a muscle just like any other and can fasciculate with the best of them . In the scenario of bulbar onset i am lead to believe that that as in lima onset the fasciculation tends to appear (if ever ) when the affected muscles are seriously weakened ie tongue weakened causing slurred speech or swallowing difficulty . .i am yet to hear of anyone whose bulbar onset started with tongue fasciculation . . I talk with some experience of tongue issues that started 6 months ago . . To cut a long story short my tongue started twitchin after some mildly slurred speech . . Had an emg(of the bulbar region and it came back clear . . I hope some of this reassures you. I wish you good luck and god bless . . Alex

Thank you so much for your advice! It does make me feel better to know it could all be harmless!

 

[Marlene3460]

Err, sorry! In my previous post there should be "With BFS there is NO negative"... Silly I cannot edit.

Lol its ok! And thank you for the information I have a app with a nuero for the 20th of June for a emg! A little frightened to get it!