twitching tongue

[anxiousmom]

Hello to all,

First of all, this web site has been so helpful to see that i'm not alone with all of my twitching. It started for me in my eyelids that lasted about 4 weeks & then just progressed to pretty much any spot you can think of. I don't see that a lot of people post that they have twitching in their tongue and I'm wondering if this is normal for others. I have no speech deficits or swallowing problems but I do have intermitant tongue twitching (like several times throughout the day).

Any comments on this? Also, I've seen a neurologist & he's intrigued by this website that I've mentioned to him.

[Sandra]

Hello anxiousmum!

You sound like me! My twitching started in my left bottom eyelid and lasted for a couple of months, it then ovenight spread everywhere and I have my worst twitching in my calves, they are constant! Dont worry the tongue twitching thing seems very common on this forum, alot of people here have twitching in their tongues! My best advise I can offer you is whatever you do, DO NOT GOOGLE twitching. I am also a mum of three great kids and during my darkest days of this whole BFS thing this forum was my saviour!

Hope you are feeling better!

Warm regards
Sandra

[imhere]

anxious mom---yep, tongue twitching is included!!! so is just about everywhere else. sometimes, you get what everyone calls "hotspots", and you'll twitch there for a while. my eyes started twitching a while back, and twitched for about a month straight!!! i just looked down a lot, and didn't have many long conversations! sometimes my back twitches, my thighs, my scalp, my nostrils. no rhyme or reason...my feet and calves fasic 24/7, have since the onset of my symptoms. keep reading the posts, they'll really help you. good luck!

[Jeliota]

dsfg

[seanrblock]

Hey-

I have had tongue twitching. I had it VERY bad where you could see them for about 3 soild months and then they came and went...no more now! WOOO HOOO! But seriously trust me on this. I talked to my neuro about it...he saw them and was not worried at all. They can be in ANY muscle and stay there for a second...or for years (like my left foot)....but they are benign. My neuro told me that if you had anything going on with your tongue before you had twitches you would have noticed problems forming words (not just a stumble...but slurring badly)...then atrophy and twitches. He told me how to spot *** in the tongue but I am not going to post it...because back when this first started with me I was self testing and examining myself for hours at a time in a mirror. But basically the neuro can tell...but it does NOT start with twitching in your tongue...its VERY clear. Dont worry....its BFS. Or maybe TCRS. This Crap Really Sucks. Thats better.

[Angie]

I always reply to anyone aksing about this because when I first had this symptom I found it scary, too. It's just the same as any other twitch though that can occur within our peripheral nervous system. Now I don't think of it any differently than any other twitch that I get as they all part of this benign condition. I get the tongue twitch quite often. There a a number of other people that do, too. Hope that helps!

Also, you should mention http://www.pnhe.info to your neurologist as a source of information regarding the autoimmune type of BFS or PNH. That site has information on symptoms and studies done regarding this condition.

Take Care,

Angie

[anxiousmom]

Thank you so much to all of you who took the time to reply. All of the advice is much, much appreciated.

Toodles for now.

[Capital H]

I am a tongue twitcher and I am certainly far from being the only one here.

Tongue twitching outside of this group seems to have a sinister reputation it does not deserve.

[hellomedoly]

oh I know my tongue twitches too! i guess it just comes with the BFS package!

[annebazemore]

Don't worry about the tongue twitching. I have had the tip tinlge since Nov. 2005 and then the left side twitching for about a month now. It seems to be a common thing with BFS. I even have a tinlge or twitch on the left side of my scalp! This stuff will show in any muscle it can get it's hands on.
God bless,
Anne B.

[Mark S]

I did have it and periodically it will return. It was only constant on my tongue in the very beginning and resolved fairly quickly. Some of us have had it...it scared the heck out of me...I remember when it started and I actually saw my tongue twitch...I freaked out totally...I was sure that I was dead but that was three years ago and I'm still going strong.

[c4110djh]

I've had tongue twitching also, tingly and full on twitching. Initially my BFS started in my lower eyelid area. My tongue twitching has been worse than ever before during this relapse. Best Wishes, Denise

[tongue person]

Hello,
I just joined this forum to say that I was really concerned about 8 months ago about the seriously weird twitching I had in my tongue. I'm not a massively twitchy person (occasional eye twitching when tired). People would look at my non-twitching tongue would say 'oh no, everyone's tongue moves like that all the time, grow up' and then a twitch would come on the tip of my tongue and it would be 'oh my god it is like there is a tiny animal in there'. Two random points would contract together with great specifity.

It was weird, irritating and I got really freaked out by it - not helped by a lot of what I read online after searching for 'tongue twitching'. Anyway, It went away completely after a few months. I thought someone in my former-predicament would like to compare with my experience.

I"ve got my two tongues crossed it goes away for all of you.

[cmjordan28]

I have tounge twitching in the tip - on the top -can see it and feel it - some days it is not bad, some days it is. I have had the tounge twitching for 4-6 months, off and on.

I started twitching in Nov 2008 - started in my left hand - within a month it was in my left arm, then bodywide for well over a year now. Have seen several neuros (3 different ones) - they have all assured me that twithcing in the tounge is no more sinister than twitching anywhere else - they just said it is less common. They all said that twitching in the tounge would not be the presenting symptom - that there would be atropy, weakness, slurred speech, etc. It freaked me out too though - actually still does. Funny - I can now ignore the twitching in the rest of my body that used to bother me so much - because now I only focus on my tounge - and just shut out all the other twitching around the rest of my body that I was so worried about for the last year. The mind is a powerful thing...

[cmjordan28]

I just thought I would post again - almost 2 years after my last post to say that my tongue still twitches on and off - plus global twitching throughout my body. So for all of those out there worrying - don't! Some people just have BFS. My dad has had it for over 40 years now. No ryme or reason...