Tongue Fasciculations

[amyecpa]

Hi Everyone,
I leave to go to Mayo clinic in Jacksonville tomorrow, but I have a question before I go. Can tongue fasciculations be benign? I've had fasics everywhere, but have never felt them on my tongue. Still don't, but...... stupid me got a mirror out and barely stuck my tongue out and sure enough it's twitching to! I've visited the BFS forums, but they don't talk about tongue fasics. Again, I don't feel these, just see them. My fasics also don't seem to jive with the things that people say on the BFS forum. i don't have them all over continually. I just feel them several times a day in different places. They originated and are concentrated in my left calf/thigh, but I do have them in feet,arms,hands, abdomen, back, you name it. Any thoughts about the tongue fasics?

 

[Moonmark]

Hi Amyecpa,

I thing it is hard for a layperson to diagnose tongue fasciculations. when I stick my tongue out, my tongue twitches a lot and also does so at rest in my mouth. (I have on and off again twitching and some muscle weakness, too). A neurologist specializing in ALS at Massachusetts General Hospital in Boston (which is a teaching hospital for Harvard U. med school) said the tongue twitches that I am experiencing are not characteristic of ALS. Once I heard that, I stopped examining my tongue. I had a normal EMG on two legs and one arm a year ago and was told then that I do not have ALS. I am supposed to follow up every 6 months and repeat the MRI and EMG with the neuro, but I have not done so yet this summer.

I hope your appointment at the Mayo goes well and you get some reassurance that what you are experiencing is not ALS.

good luck--

Sandra

 

[amyecpa]

Thanks Sandra for your response. I wish you luck on your next follow-up appt. I do, however wish that I would have more responses. Maybe from Al, Wright, Joel, etc. I think they might just be a little tired of me and my endless questions. The one thing that I can say that sets me apart from other twitchers is this.... I've have neuro symptoms for going on 3yrs with all clean tests. I just started twitching about 8wks ago. To the best of my recollection, I don't believe that I had any knowledge that twitching was involved in ALS. It wasn't one of my symptoms so I guess I paid no attention. I had never heard the term "fasciculation" until I Giggled muscled twitches. So, I'm pretty sure that they are not some type of psychosomatic response to my ALS fear. Any thoughts? comments? I'll even take yelling or berating. Just want some contact. I feel that no one understands, not even my local neuro who never took me serious. sorry to vent, just feeling down and VERY nervous about my trip to Mayo.
Amye

 

[laurel]

All the best to you Amye with your appt. Let us know how things go.
Laurel

 

[maryhahnward]

Amye,

We felt that way for a long time. When my husband finally got a diagnosis it was weird - you somehow feel vindicated, i.e., you have not really lost your mind and you feel deflated because it is not the diagnosis you ever want to have. In the end you have no control over that diagnosis but you do have control over how you react and respond to your life situation.

I wish the best outcome ever at the Mayo Clinic.

Mary

 

[Kohler]

Amyecpa, it seems to me that you have indeed gotten some good advice and contact from the people responding to this thread (no yelling or berating needed). My sister is also currently in the process of being evaluated for her symptoms, and like you we have a lot of confusion and uncertainty. Best of wishes for your upcoming tests and appointments.

 

[AndyDJX]

I've visited the BFS forums, but they don't talk about tongue fasics...My fasics also don't seem to jive with the things that people say on the BFS forum. i don't have them all over continually. I just feel them several times a day in different places. They originated and are concentrated in my left calf/thigh, but I do have them in feet,arms,hands, abdomen, back, you name it. Any thoughts about the tongue fasics?

You need to search the BFS forums a bit further, because they absolutely talk about tongue fasics there. Here are several links to topics on tongue twitching (there are over 300 pages that come up when you search "tongue" and over 6 pages of threads that have "tongue twitch" in the topic title.

AboutBFS.com • View topic - Tongue twitching etc.

AboutBFS.com • View topic - Tongue twitching

AboutBFS.com • View topic - tongue twitching

AboutBFS.com • View topic - tongue twitching

AboutBFS.com • View topic - Tongue fasciculations

AboutBFS.com • View topic - Tongue Twitch

AboutBFS.com • View topic - Question for tongue twitchers

AboutBFS.com • View topic - Doesn't anyone else tongue twitch?

Also, believe me, you can't say your twitches don't jive with the BFSsers twitches, because every type of twitch imaginable has been discussed there. There are people with diffuse twitching, focal twitching, big twitches, small twitches...there could be a Dr Seuss book on the variety of twitches there.

Tongue twitches have gotten a bad reputation, and doctors do seem to pay attention to them more, but ultimately there are countless people who have experienced tongue fasiculations that went on to have nothing more than BFS.

 

[amyecpa]

Andy, thanks so much for the info. Someones signature on the BFS forum says something like:
1. No its not bulbar onset
2. No you're not the only one with that symptom
3. We've all had a twitch there before
and so on and so forth. I guess I just took my symptoms and couldn't see the similarities due to my own anxiety. I've read thru so many of the "tongue" posts and feel like a fool. The neuro at Mayo today looked at my tongue for about 1 second. Sometimes I need a wake-up call to get outside my own head and see things for what they are.
Thanks again,
Amye

 

[nightwolf_mk]

I have been having fasciculations and other strange things for almost four years now. I don't have a diagnosis but the doctors said that my fasciculations are benign and I have them on my tongue too, as much as in other muscles. As I have been told it doesn't matter where the fasciculations happen, what it matters are the other symptoms that appears like weakness and atrophy. In the absence of these other things the fasciculations are not a concern even if they happen in your tongue. In my case I have other things that points towards some neurological disease, like hyperreflexia for example, but I haven't developed the other signs so even having random muscle twitches (in my tongue too), cramps, pain, pins and needles sensations and hyperreflexia my case is not classified as a motor neuron disease yet.

Best of wishes for you!

 

[Alyoop]

Hi. Hubby is a neurologist and he said to me last year that fasciculations are only important if the muscle is at total rest. I have tongue fasiculations if I poke my tongue out and so do alot of healthy people without ALS. What you have to do is leave your tongue completely relaxed while resting in your mouth (hard to do if you are anxious). Only then can you assess the movements.
I have a twitchy tongue when poked out, but completely normal when at rest.
Hope this helps. I just saw you sauy that you had poked your tongue out, so they are completely irrelevant to a neurological examination.
Aly

 

[AndyDJX]

As I have been told it doesn't matter where the fasciculations happen, what it matters are the other symptoms that appears like weakness and atrophy. In the absence of these other things the fasciculations are not a concern even if they happen in your tongue.

This sums it up perfectly.

 

[amyecpa]

Thanks everyone!