Some reassurance for tongue twitchers......

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Some reassurance for tongue twitchers......

Postby mommylondon on December 3rd, 2010, 1:12 am

Most of you know that I have a few people that I talk to off the site that I try to help through the early fear stages with their BFS. One of them has big time issues with tongue twitching, and its not just a twitch here and there with a tingle, her whole left side of her tongue is moving and denting in when it moves 24/7. One of the reasons I wanted to help her so much is because she is pregnant and does not have the option that most of us do, to just go and take some anti-anxiety meds to get over the anxiety hump that comes with all this. So I put an email in to one of the people that truly helped me understand how neuro disease works and helped to show me why I DONT have ALS. This person studies and works in the neurological field and has been a tremendous resource of information and knowledge for me to have access to during my ordeal, just as much as this site has as well.

My first question to her was: Should someone who is 28 with a grandmother who died of ALS, and having very pronounced tongue twitches with no weakness, be concerned with ALS??

Their response: Tongue twitches are not diagnostic of anything anymore. There are benign tongue twitches brought on by stress, the flu, a pinched nerve, medications..endless amount of things. Old literature and outdated information ties tongue twitching to ALS only.. when it simply is not true.
Thats the meat and potatoes of it all..if she is not having speech problems then it is def not due to ALS. Tongue twitching, if malignant, will only come after atrophy of the tongue which is only preceded by very slurred speech and I mean unable to talk. A good friend of mine who is diagnosed with ALS, cant eat or talk and he still has no tongue twitches. When it comes down to it, twitching means nothing without any weakness.

At 28, bulbar onset ALS is def the last thing in the world it could be. BFS patients tend to read old and outdated literature..I've petitioned Cleveland Clinic to take it off their web site, whereas they agree currently, tongue twitches are no more omnious than any other twitch. The guy that wrote all that crap was only a resident. We will see,, only they can remove it so who knows, but they agree without speech problems, ALS is very unlikely.




I asked, should she be any more concerned since her grandmother died of ALS??

Her reply: Sporadic ALS doesnt turn into Familial ALS. Familial ALS is genetic and one of her grandmothers parents wouldve had it. Then if her great grandparents had 4 children at least 2 would have it. Further if her grandmother had at least 2 children one would have had it and familial onset is very early even into the 20s so her mother wouldve had it long ago. Then further is she has more than 2 siblings at least one would have it. Giving a grand total of at least 3 people witnessed by her generation that would be living with ALS right now.

And as an advocate and working with Young Faces of ALS for TDI I only know 14 people with ALS under 35 and only 2 of those have bulbar and both are familial and have never skipped a generation in their family.

Also tell her that Familial ALS only makes of 10% of all cases of ALS. So for example we have 30,000 people living with ALS at any one time. Thats 3,000 people out of the USA that have familial ALS. Out of 30,000 only 6,000 have bulbar onset ALS. Out of those, only about 40 are under the age of 35 and thats an overestimate. So her chances of having Familial bulbar ALS at 28 is zero chance, and Sporadic Bulbar Onset at 28, and yes I just did the math for her, but after gathering all of the statistics and populations deviations, her chances are about, 0.000013029%.

So I thought I would post this here. Maybe it can help some of the ones who worry because of there tongue twitching or for ones who's tongue just began twitching. I realize these figures may not be 100% dead on, but they are awfully d*mn close, just to give you an example.

Hope it does help someone..

Take care

Robynn :D
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Re: Some reassurance for tongue twitchers......

Postby bailyloves on December 3rd, 2010, 5:35 am

THANX Robynn for an exellent informative post..................takecare........baily.
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Re: Some reassurance for tongue twitchers......

Postby RunningBear on December 3rd, 2010, 12:29 pm

Excellent Post, St. MommyLondon
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Re: Some reassurance for tongue twitchers......

Postby mommylondon on December 3rd, 2010, 12:56 pm

Thank you Baily and Chris, I'm glad you liked the post, hopefully it helps someone.

I dont care to much for the Saint title thing, Saint and my name have never been used or seen in the same sentance :lol:
Last edited by mommylondon on December 4th, 2010, 3:39 pm, edited 1 time in total.
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Re: Some reassurance for tongue twitchers......

Postby msm on December 3rd, 2010, 9:36 pm

Robynn, this is an excellent post for tongue twitchers. I think it really highlights how very miniscule the chances are of tongue twitching being anything sinister and I know I would appreciate knowing this if I was bothered by tongue twitches. I am just amazed that more of those people who have tongue twitches havn't come on here to thank you for posting it. So thank you for posting it even someone who does not have this symptom can appreciate how small the odds of getting als acutally are based on this post.

Mary
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Re: Some reassurance for tongue twitchers......

Postby aussie sufferer on December 3rd, 2010, 9:49 pm

Not a tongue twitcher myself, but very informative post Robynn-good job.
cheers
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Re: Some reassurance for tongue twitchers......

Postby mommylondon on December 3rd, 2010, 10:04 pm

Hi, thanks baily,MSM, and Aussie, I'm real glad you all liked it, like I said, I just hope it helps some of our tongue twitchers put some of there concerns into perspective. I'm sure it can be pretty un-nerving to have your tongue twtiching all the time so I figured any reassurance I could dig up may be able to help some.

Take care everyone

Robynn :D
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Re: Some reassurance for tongue twitchers......

Postby bfshopeful on December 26th, 2010, 10:29 pm

Wish I would have read that last week. LOL
"It's mind over matter. If you don't mind, it don't matter."
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Re: Some reassurance for tongue twitchers......

Postby mommylondon on December 26th, 2010, 10:32 pm

Hahahah, I guess I could have told you it was here, I forgot I posted this a few weeks ago, LOL. My bad :lol:
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Re: Some reassurance for tongue twitchers......

Postby sadiesmummy on January 6th, 2011, 6:47 am

Thank you for this - as a daily tongue twitcher, this helped a lot.

I need to control my anxiety as I think about my tongue all of the time! :oops:

Cheers,

Sarah-Jane
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Re: Some reassurance for tongue twitchers......

Postby mommylondon on July 20th, 2011, 5:00 pm

:idea:
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Re: Some reassurance for tongue twitchers......

Postby pdodge715 on August 8th, 2012, 9:38 pm

Wonderful post! just came across it while looking specifically for posts on tongue twitching...I am 26, twitching for about 7 weeks, and just developed tongue and facial twitching yesterday, along with some throat discomfort. Needless to say, my xanax has been the only thing keeping my feet on the ground since then. This post is very reassuring, thank you for sharing!
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Re: Some reassurance for tongue twitchers......

Postby mommylondon on August 10th, 2012, 9:24 am

You are very welcome Pdodge..Happy to hear it helped...Feel free to join us on the BFS chat room..I will leave you the link.

http://us4.chatzy.com/Twitches-R-Us


Take care

Mommylondon :)
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Re: Some reassurance for tongue twitchers......

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