6 Month Journey with Twitching Tongue

[Merryy]

I hope you have the patience for a new twitcher. It all started 6 months ago. I was having lunch and then felt my first tongue twitch. I thought it was funny at first, until I decided to google it… To make a 6 months story short, I've seen 5 neurologist (all said "you don't have ***") had an EMG, brain MRI, CK blood test – all which were fine. Before the tongue twitches begun, I felt my speech was heavy, though this was not a new feeling for me. I've had this sensation of heaviness for 3 years now (on and off – although now it's ON ALL THE TIME). I've read some of the symptoms you all BFSers have and I can tell you I've had it all. I have twitches in my calf, stomach, lips, feet – the whole thing.This has been pure hell. I lost my job since I find it hard functioning on daily basis. Had it not been for the tongue twitching, I probably would have felt a whole lot better. It's been twitching constantly for over a month now (before it was on and off), and it now spread to a new location at the back of my tongue (I had it occur only on the tip of my tongue before). My last neurologist, whom I trust and considered to be one of the best down here, said he couldn't find anything wrong with me and that I should try to ignore the twitches and give him a call in 6 months to report whether it's getting better.I am terrified and having a very bad day at the moment since the tongue twitching are unbearable. I guess what I need is to know that I'm not alone on this one, that there are other people with tongue twitches like myself who are fine health wise.I know it's a matter of time until I'll know that I'm off the hook, but how does one remain sane in the meanwhile? I would appreciate any support/tips I could get. I feel I'm going completely nuts :crying: Thank you all M

 

[SandyAnn]

Hi May!I have been twitching now since mid sept last year!! Have seen a neuro and have had a excellent clinical in which my neuro told me that after 7 months of twitching you would have some very serious issues. I know May, in the first few months I was so scared, I couldnt function properly as a wife and mum. This forum has been my saviour!! Unlike you May, I have only twitched on the tongue a couple of times but absolutely everywhere else, including my calves which have been 24/7 since the beginning. Please dont worry, your emg was normal, you sound just like the rest of us here. Oh, and my neuro said that when I walked into his rooms he could see that I was fine...Do what I did, May go to a movie, visit some friends, enjoy long walks, etc!!If you want to please feel free to PM me anytime!Hope this helpsSandra

 

[Merryy]

Dear Sandra,Thank you so very much for your reply. I try to keep myself busy, though it's not an easy task considering the fact that I am jobless at the moment. I also keep away from google (haven't googled for months now). The tongue thing is absolutely the most frightening of them all. I wish it would get better, or stop, but it keeps getting worse perhaps because I concentrate on it all the time, I truly don't know…I thank god for this forum. Although I didn't write before, I do read your posts and it calms me a little. Yet there are days when nothing helps….Thanks you Sandra

 

[cindyandco]

Hi May: I know what you mean about the tongue twitches being the scariest. I have just begun to have them on a regular basis. I have had a random tongue twitch here and there for years, but in the past few weeks, I am having them every day. Not all the time, but every day. I do know this, whenever I think about it, they will begin. Talk about power of the mind . I am sorry you lost your job--the anxiety of this can be crippling. If you have had all those tests, then please know you are okay---regardless of what twitches. Take our advice and take up a new hobby, gardening, scrapbooking, whatever you can to occupy your mind. If necessary, see your GP and get some anxiety meds to get you over the hump. I have been taking Buspar and Prozac for 6 months now. Initially, the Prozac made me twitchier, but after my doc reduced the dosage, I twitch less and function much, much, better. Totally stay away from google, unless your googling gardening tips, listen to and be confident in your doctors. As you get your mind off the tongue things, the twitches will diminish--promise!Someone on here gave this little self-test. Sing "Deck the Halls" at an upbeat tempo. If you can do this (and I am sure you can) then you have no motor issues with your tongue. Hope you are doing better really soon. Feel free to PM me anytime.BlessingsCindy

 

[Merryy]

Believe it or not, you just managed to put a little smile on my face. Thank you so much for your attention and the tips.I guess I'll be spending quite some time here until I'll KNOW that I'm fine. I'm not there yet...M

 

[AnnieBazemore]

I have had tongue tingling that began over two years ago. Then tongue twitching over two months ago. My neurologist advised that in my case it was benign. He asked me to touch the back of my teeth, stick out my tongue and move it side-to-side, up-and-down slowly. He then asked me to push my fingers away from my cheek with my tongue. All were normal...Thank God! He said that the twitching with the tongue would happen in the late stage and that I would have had trouble swalling food by now. He also said that bulbar als begins deep in the mneat of the tongue not near the tip or to one side of the tongue. Try to listen to your doctor, I know it's hard, that's why we are all here for your support. Keeping in mind that this is a support site and not a basis for diagnosis. I hope this gives you soem reassurance. Anne

 

[ytewestGo99]

Hi May, I have read the stories of a lot of tongue twitchers (all benign) on this forum. And as someone else already pointed out, bublar ALS progresses very fastly. At 6 months, you wold have lost a drastic amount of weight, been incapable of swallowing your food and you'd be in serious serious condition. I also lost a good job over ALS anxiety. It stinks because it was a GREAT job, but it happened. I know it's easier said than done, but you have to pull out of this mindset. Your doctor told you it was benign, you're not a doctor, so believe what he said. After all, you went to him seeking his opinion because you trusted a qualified neurologist. So, keep that faith. I lost a lot of weight from having anxiety and just not having any sort of appetite. It was horrible. Don't do it ... Your twitching is benign so please, for your own good, let it go God bless,Troy

 

[Merryy]

I would like to thank you ALL for your support. Unfortunately I am still extremely stressed at the moment since it has been getting much worse on the tongue. I used to have the twitches only at the tip of my tongue, but it's all over my tongue now, nonstop. My neurologist told me to give him a call had the situation deteriorated, so I did, but he'll get back to me only on Monday. What can I say, I'm looking forward to reach the point where I'll know what most of you guys already know – that this is benign and won't kill me.May

 

[holisticdriver]

This is just my personal opinion, I am not a doctor (contrary to popular belief in the past) so please don't take offence as I'm only offering advice based on my own experiences years ago. I think you are seeing the wrong doctors with regards to your twitching. If I said this was "all in your mind" I wouldn't mean that literally but I don't think I'd be a million miles away. I know a lot of users on this forum will tell you that BFS is the likely cause, but in your case it doesn't sound like it. Based on your initial post I'd say the likely cause is anxiety/stress related. Like so many people you have experienced an unusual sensation in your body, wondered what it was, decided to go on the internet and go down the route of "self diagnosis" which in this case was the catalyst of a chain reaction in which you are losing control. If you type 'bad headache' into google it will probably tell you that you have a brain tumour but 99.99% of the time its most likely not the case. From what you have said, I'd say you had a benign twitch in your tongue, focussed too much on it, anxiety has took over and your twitching has spread mostly cause you are focussing on it. Believe it or not most people twitch all the time, its just part of what muscles do, but if you focus on them too much and combine with anxiety, sleep deprivation and fuelling your mind with self diagnosing stress then the twitches will become so much worse. If I'm wrong then whatever you have is probably benign, perhaps BFS which often occurs after you've had a flu virus or went through a stressful period in your life, can you remember much before the tongue twitching? i.e what your state of mind was like then? Again this is something you should not speak to Neuroligists about, not that I think its wrong to see a Neuroligist and get an opinion...but 5 neuroligists! This would definately support an Anxiety/OCD based problem, as people with these problems constantly need to seek reassurance.My honest recommendation would be to speak to a doctor about how this is destroying your life, he should recommend you to a good psychiatric doctor/nurse who could possibly prescribe a short term treatment of muscle relaxants such as Diazepam and see if it makes a difference to your twitching and state of mind.