Tongue Twitches for 8 Weeks

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calmmommy

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Hi guys,I haven't posted in awhile, and I am really trying to get my anxiety over all of this under control. However, it has been nearly 8 weeks and I have had a constant twitch in my tongue. It is on the right side and it goes off every few seconds. It looks like a pulse. I don't feel it at all, but my neuro and several others have seen it. I still have the occasional tongue twitches that I can feel randomly on different places on my tongue, but this constant twitch has not gone away. My neuro didn't know what to make of it at first because he said that he really doesn't see benign twitches of the tongue, but that doesn't mean that it can't happen. There has not been a single day in 8 weeks where my little spot on my tongue has not been pulsing away. I have never felt it, and I know that with ALS, most people don't feel tongue fasciculations. Anyways, my neuro has now EMGed my tongue 3 times because he wanted to keep an eye on the twitch. I had trouble relaxing it, but he said he was pretty sure he was able to get a good baseline. I had my tongue done, my neck, my jaw, and my trapezius. I also had 2 facial muscles done. Everything showed up fine. I wanted to know what you guys have heard on the accuracy of tongue EMGs and has anyone ever experienced constant tongue twitching that they can actually see on their tongue when their tongue is relaxed. My neuro said that a tongue EMG if done correctly is just as accurate as a limb EMG, but I have read several discrepancies on this. I am looking for other's opinions. Thank you so much. I am truly tired of seeing my tongue pulse in and out and I wish it would stop.
 
Please don't do this to yourself. A professional gave you 3 (!) EMGs of the tongue and you are questioning the accuracy? Quit looking at your tongue. I understand the old tongue twitch is a scary one for all of us. Most of us have had it at one time or another, or still do. The fact is, it is just another muscle and just as likely to twitch as any other. Your EMGs were normal which means no ALS for you. It is not hiding from your neuro. You just plain don't have it.
 
I can totally understand your anxiety. I have had tongue twitches that I feel for about as long as I've had all the other twitches (15 months). Today, I had an unmistakable thumper right above my collar bone and a good sized one in my cheek. They lasted seconds but reminded me once again how systemic this whole thing is with me. The following is just my opinion based on my experience of seeing many neuros, having multiple EMGS, and a muscle biopsy that showed things many said an EMG would detect:An EMG can never give you 100% peace of mind and anything less than that with the symptoms you describe is not going to be 100% satisfying. What will give you the most peace in my opinion is (1) the progression of time without the development of functional problems, (2) the fact that others here have tongue twitches for years and nothing more happens (search posts under Krackersones for tongue and you will find lots of info), (3) that a women who used to be on this board has had tongue twitches for over 10 years and nothing more happened, and (3) that people with myasthenia gravis (sp?) and chronic inflammatory demyelinating neuropathy (CIDP) have reported tongue twitching. The last fact may not sound reassuring but both conditions can be treated and are not always disabling. Also, the Isaacs website that was discussed in a recent post contains an article on Isaacs/neuromyotonia and a certain percentage of the people in that study had bulbar symptoms along with twitching everywhere else. I wonder if your doctor is aware of all the conditions (the ones I just mentioned plus bfs) that can cause twitching in the tongue besides the one you are worried about. If not, it might be nice to find one that is.I avoid looking at my tongue, especially when I feel it twitching. I do not want to see the twitch as I know the image will stick in my mind or pop up at the worst possible moments. However, the fact that I feel it and it feels like all the other body twitches I feel and see, leaves me no doubt that it is twitching. So whether yours can be seen, felt, seen and felt, is constant or sporadic is really of no consequence unless it is causing functional problems. This is not an area that neuros know much about as indicated by your doctor's statement. I also wonder what people really mean when they say "benign." This is a somewhat vague term. If you have peripheral neuropathy that you can deal with with medications even though it may progress a bit and still live a normal life, would a doctor say it is "benign?" I bet doctors have different ideas of what "benign" means. To me, it means it won't disable or kill you but it includes things that are not normal and may need to be managed. I think for others it means something different. Ask your doctor what he means by benign. Knowing there is a middle ground between "nothing is going on" and "the worst disease most of us can imagine" is possibly comforting because it allows you to acknowledge that what you are experiencing is not normal but does not have to be devastating and may just simply be annoying.
 
Thank you so much for your responses. For some reason, I always fear the twitches I can see but not feel the most. The fact that my tongue has not let up has literally torn me apart. I also have a raw like appearance to the right side of my tongue, but I know that if I truly had tongue atrophy, I would have problems moving my tongue. My neuro has always told me that tongue EMGs are very accurate, but then I've read up on other medical reports online that completely disagree. I have also never had any tongue fascics show up on an EMG, but that one flicker is always there.
 
There have been few statements about twitching and EMGs and all the rest I've heard from doctors since this started that I have not found contradicted in some way or other by some other source. I confront my doctors about these contradictions and they acknowledge them and usually respond with something along the lines of it is common for doctors or studies to disagree or be inconsistent. This fact can make you crazy with anxiety or you can take it how I take it which is nothing is 100% so if you see a contradiction it does not have to throw your world into a tail spin. Expect and make peace with a certain amount of uncertainty. Focus on the facts that get you to the 90% reassurance range and realize that no one has 100% certainty about anything anyway. If you tie your hopes to statements that you believe are 100% certain and then find a fact that puts a dent in it, you will be prone to a constant state of emotional turmoil. I think my approach is more realistic and actually more emotionally sound in the long run.As time goes by I think our healthy lives will be a source of great comfort to both of us. Keep us updated on your continued physical well-being even if you have major anxiety moments. We tongue twitchers can relate better than anyone to the anxiety involved with twitching.Krackersones
 

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