Seeking Reassurance for Twitching/Jaw Symptoms

Hi all- I need some major reassurance. I began twitching all over my body about 3 months ago. Of course, I looked up all the ominous info on Google about ALS and totally freaked out. Saw a neuro who did an EMG on the right side of my body- clean. He gave me a DX of benign fasciculations. I then found this site and felt a lot better. About 3 weeks later, I developed new symptoms in my chin and jaw. It just felt weak, I had twitches, felt like I was talking funny. I went back to the neuro and he said there was nothing to worry about. Well, since then it has only gotten worse. I feel I have every symptom of bulbar onset. My tongue has indentions from my teeth- more on the right than the left- it has visibly changed in appearance. I have trouble talking a lot- stumble over words, sometimes I swear I slur. It feels so awkward to talk. I yawn a lot and am occasionally hoarse. I even bite my tongue when I talk somtimes. I saw another (very experienced) neuro for a second opinion and he practically laughed me out of his office- said I was depressed and that there was "no way I had ALS". I just went back to my original neuro and told him I was convinced it was the worst. I finally convinced him to do an EMG of my tongue and cervical spinal muscles- again, clean. He said he just didn't feel like there was anything wrong at all- despite ALL of my symptoms. He also had no explanation for the way my tongue looks. He suggested that I try to just put it out of my mind and move on- no matter what I feel my sypmtoms are. WAY easier said than done. I have been living life as if I was going to die in 18 months. My husband can hardly take any more of my anxiety and desperation. He has been supportive but is losing patience. I don't know- I feel like everyone thinks I'm crazy. It's so hard to describe this to anyone not going through it- I don't sound like I'm slurring so it's not noticeable to anyone else. I just sound like a total hypochondriac. I could really use some words of support- I am so afraid of this thing- I can hardly function. Am I totally crazy???? Thanks to anyone who replies.

Kristin, I know it is hard to believe, but there is no way you have ALS, there are things going on in your body that you have never experienced before, and they are intense, and to have someone tell you there is nothing wrong is hard to accept. There is something off in your system, but nothing that is going to kill you.Three Neurologists would not miss Bulpar ALS if it was at a point it was starting to cause speech issues, even minor speech issues,and at the rapid pace of Bulpar I highly doubt they would miss in at any point.I have been exactly where you are at, I would show my wife my calves and say "you see the difference, see, see" and she would look them over, feel them, and say, "no". Because of what we are feeling in our bodies, we are not objectively looking at things. Your main issue right now is the anxiety over this, there were days at the height of my ALS fears I could barely talk, fumbling words, you name. Anxiety will reak havoc on your system, cause poor sleep which only make things worst. Remember, you are walking around thinking you have an incurable deadly disease, that may cause some Anxiety.The very first thing you need to do, it take a deep breath and tell yourself you do not have ALS, which you dont, that is the good news. Here is the bad news, and this is something no one ever told me, It could get worst, alot worst, and in can last quite awhile. Your story is classic BFS, and the first step to getting over what ever has hit our systems to cause this is to accept that it is not something terrible that doctors have missed, or the more popular "it just has not progressed enough for them to spot it".Try and do what you can to get a good restfull nights sleep, try and calm down the stress in your life. You are going to get through this eventually, but you need to get over the ALS stuff.Take care

Hi,I am going through EXACTLY the same as you. I had twitches for three months (started September 2008), already felt like I was having minor speech issues, along with stiffness in the hands and arms, buzzing and such, I had a clean EMG (Dec 08, 08), on right side and also tongue, also clean clinical exam, i.e. no clinical weakness or unusual reflexes. I was told absolutely no ALS by a doctor who specialises in ALS and other neuropathies and EMG.At first I walked out of the hospital totally relieved. He also told me that it was stress (as all of the symptoms that I am worried about started after I noticed something small). I was hoping that the symptoms would go away quickly, but they were still on my mind, and my mouth issues seem to have gotten somewhat worse. I wake up thinking about them before I open my mouth, so as soon as I start talking I am concentrating on it and it seems to be more effort for me to speak. Anxiety can cause speaking and swallowing issues, so maybe because I am constantly anxious about it it is just making it worse. Also, if BFS can cause stiffness in arms and such, why shouldn't it also cause stiffness in the tongue and such also (as this is what it feels like when I talk, like the tongue is stiff and cannot get to each consonant fast enough and misses some).I would love to keep in touch, as we seem to be having the same anxiety (and my boyfriend also doesn't want to hear it anymore). I also have issues trying to get the right word out, especially when talking to others at work, and I know that I have had this issue in the past. PM me of you wish.Take Care and God Bless.Rachel

This is the COURSE it goes- you get over limb onset and you go straight to bulbar- Bulbar issues are CLEAR ot a neuro. and people around you. I went from getting a clean EMG from limb onset to thinking ok must be bulbar but let me reassure you and I spent 6 months on als board- with bulbar you do NOT have body wide twitching at onset. By the time you twitch you have LMN signs *lower motor neuron signs* which is what the EMG detects. YOU CANNOT HAVE BULBAR. I promise you and you dont have ALS. What you do have is what I have ANXIETY and it can cause many of speech problems. Look it up @ AnxietyCentre.com ! You'll find comfort there- its just the cycle of BFS you go from thinking limb onset to bulbar- I did the SAME THING, but its not possible with widespread twitching clean emg and or clinical.Lovely *your fine* I promise. Also remember anti anxiety meds can make you slur . When I met my husband I was on a LARGE dose of anti anxiety meds and he said I talked like Anna Nicole Smith..even to this day when I take my recommended dosage of my anti anxiety meds he laughs and calls me Anna because I talk slow and slurry..However the next morning when he leaves for work and we talk through out the day he says I talk to fast and Im fine. It just doesnt work that way. I promise. Trust your doc.

I ALSO HAVE PASSED FOR THE SAME SITUATION.AFTER CLEAN EMG I BELIEVED IN BEGINNING BULBAR.YO I SEE THE SPECIALIST OF NECK.HE LAUGHS AND ME IT INFORMS THAT ALONG THE NECK, MOUTH AND LANGUAGE THOUSANDS CIRCULATE NERVOUS COMPLETIONS.THE ANXIETY ALTERS THIS PART OF THE BODY AND FOR IT TO SEEM TO SUFFER THESE SYMPTOMS.AFTER 23 MONTHS THERE IS DAYS THAT STILL I NOTICE SOMETHING STRANGE. NOT TO THINK

Well, thanks to all who replied. I am trying so hard to believe that this is all related to anxiety, BFS, anything but the one thing that can't be cured. It's so hard to accept- the symptoms are SO REAL. I am seeing a specialist in a couple of days- pray that I get the all clear. I'll keep you guys posted if you're interested. Thanks again and hope you are all doing well too. -Kristin

You will get the all clear, everyone always does, good luck

I know exactly what you're going through. I have had speech symptoms just like yours since september. It's very unsettling. I haven't had any emgs but I've seen a neurologist who tells me I'm fine. One thing I've found is that when I let the symptoms get to me, and anxiety sets in, I read a lot more into the symptoms and they also feel worse. When I'm calm, the symptoms are still there, but I they seem more minor. I went through a real crisis about 4 months ago, but I made it out. The anxiety isn't that bad anymore. I can enjoy life now and focus on other things. But I still think about my symptoms all the time. It's hard not to, since they're there every time I open my mouth. Read through my old posts if you want to know more.Good Luck

Oh, I forgot to add. About the indentations in your tongue. I'm surprised the neuro had no explaination. They are teeth marks. I have them too, and obsessed about them a lot a couple months back. Then I noticed something I do when I sleep: I suck my tongue in between my teeth, and it stays like that the whole night. I also have a bad bite and a crunchy jaw. I clench my teeth. Anxiety is a very probabler explaination.

We ought to have medals. Everyone gets one to start with for twitching. (Bronze oak leaf cluster for the first additional appendage, silver for multiple appendages, gold for all-over including all limbs, trunk & face.) Perceived weakness or wasting would be another medal. Bulbar symptoms would be a really fancy one.You could also get a stripe for your sleeve for every six month period in which you consistently do strength and coordinatino tests on your own.If we are going to suffer with this, we might as well enjoy it.The point is, the common progression of this psycho-somatic disease includes issues with tongue, speech, swallowing. This beastie is very well known to those of us here who have been around awhile, and we can recognize it when we see it.

MENDOTA your AWESOME. I agree with you 100% as Im starting to see the light. I totallllllly believe in SOMATIZATION disorder especially after you still fear this a YEAR into it and nothing has changed and you've been given the ALL clear by the doctor. Yesterday I felt like I was talking like sylvester the cat (noone noticed) today I've been happy , cleaning and yapping on the phone all day and people are tired of talking to me cant wait to get off the phone with me so obviously my speech is fine.Warm Regards and Cheers occasins Keep posting I love it.

Hi all~~ Well, I haven't posted on here in a long time, and I miss the friends I made here! You all helped me so much in a very scary time, and I will be forever grateful for all of you!! I probably didn't express that enough, and sort of stopped posting due to other reasons, and never really explained. I began having some issues with my younger daughter that worried me more than my als scares. So, I sort of became absorbed in that for a while, which is probably part of the personality of someone with the disorder that I think is common on here. Do you ever notice that if you have something that worries you more, then suddenly the current twitching will change, or stop, at least for a while? It's amazing the roller coaster this is. Ok, so quickly, I started twitching in my thumb/hand area back in March 2007. If you read some of my previous posts, you will know of the anxiety I went through. I had it ALL. Tongue twitching, trouble speaking, trouble swallowing, you name it. My eye would twitch for weeks on end, only to move somewhere else. By far, though, the worst is the facial area twtiching, like the tongue. Nothing more than that convinced me that I had als, and only had a limited amount of time with my family. Even though I KNOW this is all anxiety, it doesn't really help just to have the knowledge of that. I still, even now, go through the range of symptoms. The thing is, when you don't let them bother you, then the symptoms still happen, you just don't have the anxiety over them, and that is then manageable. I come on here every so often to see how everyone is doing, and I had to write in response to your letter, because it just sounds exactly like me! I read it outloud to my son, and he even said, "Are you sure you didn't write that?".... Very very often, I have the trouble talking thing. And, sometimes it's really hard to explain....like it can be the tightness in the jaw area, or it can be slurring of words, it can be where I suddenly go through a bout of biting my tongue alot when I talk, the twitching of the tongue and jaw area going along with this, and just a general tiredness around my mouth and jaw that makes it difficult to talk. I am almost ALWAYS aware of it. I know, in my mind and with my intellect, this has to be anxiety, because I've had it for so long, and by now it would be worse if it were bulbar. This still doesn't help me get rid of the knot in my stomach about it. I always worry about it, even though I know better. It's the anxiety that gets the best of us. About the tongue indentations thing, I've had that for years. It's nothing to even worry about, it's a normal thing and more of a dental issue, such as grinding the teeth, or just the way your teeth lay on the tongue. I wish I could get myself to relax about it, and the only thing that has helped a little, is just to ignore the symptoms and try to go on with your life, and don't fight the symptoms too much~~let them happen, and don't get worked up about them. This board has been a lifesaver for me, but it also helped to bow out for a while. I had to concentrate on something else, and put myself on the back burner for a while, and I think that actually helped my situation. However, this disorder creeps up on us again, it never really goes away, I don't think. So, here I am, almost 2 years later, still suffering with the same symptoms, and anxiety over it. I just wanted to tell you to try not to worry, I know it helps when you read that other people have the same symptoms, especially if they've had them for a long time, like myself. Good luck! Talk to you soon, Val

WOW VAL that post was amazing- you've come so far- right now i am dealing w/ the mouth/speech issues BUT as you said I know I've had this for sometime now that is NOT POSSIBLE and its anxiety and when Im not dwelling on it and something ese bigger happens in my life it sudden become faded in the background.Great post.You are REALLY doing good and I wish you to continue to do even better. I know you've been through the ringer. I've even saw your posts on medhelp. Congrats Val. Job well done.Lovely

Thanks so much Val. It really helps to know about others' bouts with this thing. I really appreciate your input and the time you took just to try and make me feel better. I'm just in the beginning of all this still and trying to maintain a positive outlook. It's SOOOOO scary. I know you guys understand. It's hard to go through when no one around you seems to understand what it feels like- they can't see or hear the symptoms, so it seems as though I'm OK to them. I sometimes have even thought that the doctors just don't believe me. Like I'm just some hypochondriac or lunatic. I guess if they really saw anything concerning, they would have said so. Again, I so appreciate all of your input. You guys are awesome and I don't even really know you. I'll probably stick around a while just for the support. Hope you all are doing great! Thanks- Kristin

Oh Kristen. I feel so much for what you are going through b/c I've been there and back when I spent a lot of time here, I read about tons of others who went through the exact same thing. NONE of us had ALS and neither do you. Please please believe everyone here and, most importantly, your neurologist(s) who told you that you are fine. Believe me, anxiety - particularly over the fear of DEATH - can make your body go absolutely crazy. The bulbar symptoms are undoubtedly due to that - I am 100% certain. I spent so much time googlingmy symptoms (by far the worst thing you can do ever, ever, ever), posting/reading messages, obsessing, driving my poor family crazy. I even went so far as to take anxiety meds. I sympathize with you, but also with your poor husband who desperately wants to be supportive but finds it difficult in the face of someone who just won't believe the neurologists who have thoroughly evaluated her and told her she's fine. These days, doctors are so worried about malpractice suits - and frankly some want to make money - they will generally indulge patients if they have any, any doubt about their diagnosis. The fact that your doctors told you unequivocally that you do not have ALS should give you some peace. Please, trust your doctors. After I ended my trip on this anxiety trainwreck I later found out that a work colleague of mine lost his father to ALS. He told me his story, and confirmed that it is NOT a subtle disease. No doctor - let alone a neurologist - ever told him he was fine once he started showing symptoms. I wish I had some sage advice to help you with this other than "trust your doctors," but it really is that simple. You are fine - you just need to believe it. Best of luck-Joanne

I'm glad all the posts seem to be helping you! Hey, it's amazing how bad the anxiety is over this. You would think, since it's been almost 2 years for me since I first noticed the twitching, that I would be completely over this, and I still have anxiety over it. I come on here, and the reassuring posts still help me to feel better. Don't be hard on yourself, I know it's hard on our spouses, but there are husbands who have to go through much worse things. You never know when he might need you, and I'm sure you'll be there for him. Life throws constant curveballs, and who knows what the future holds for anyone~~lets hope we can be there for each other....remember, in sickness and in health!! I know what you have is all anxiety-related, and I know that is also the problem with me, but the knowledge in and of itself doesn't seem to help much. I still worry when I can't talk right, or when I get tongue twitching, or when my jaw is tight. I just have to remember that if I have something else to worry about or focus on, then the symptoms usually die down for a while, or move around or somewhere less concerning. I notice that when I have trouble speaking, or my jaw feels tight, the twitching will in general increase everywhere. I'll have more nightime twitching in my thighs, etc. As my neuro once said, he thinks it's a metabolic syndrome, in which your body has too much adrenalin floating around, and this is the way it releases it. He compared it to when you see a flame from a refinery, you know how that is basically letting out the steam? He said that's what your body is doing. And, for many reasons, such as just general stress, lack of sleep, not sleeping correctly, pre-diabetes, etc. The list is long! My neuro wants me to go in for a sleep study, and I haven't gone again yet. I went once, but it didn't work, as I couldn't sleep! I know I need to go, as I get the sleep apnea thing frequently, and that might be related. Good luck, and keep a good attitude about it all!! Val

I have had a recent re-occurance of the speech issues, but to be realistic it is related to fatigue, lack of sleep and increased stress.I have learnt over the past couple of years to distinguish between real issues that others can see, and those that I feel only to myself, those related to scary and fatal diseases are those that I am more likely to feel only to myself.The main thing that brought me here in the first place, which was my twitching tongue, I just don't look for any more because whatever is behind it and the rest of my twitching that seems to go in waves, it is pretty clear that from a total perspective I am not declining any faster than anybody else. I have certain amount of bad luck in that I have led a fairly strenous existance that has stressed out my joints and my muscles but it is by no means anything to be worry about. I have in recent times been trapped in my flat by fire and smoke having to be rescued by the fire brigade, that really brings it home to.

Hi, Hi to all, and PlayfulPants~~it's good to see your name again! I feel like it's old friends I'm connecting with again! I should have stayed on here, because with all the help I received, it's good I think if the veterans can help some of the newbies. I guess I'm a veteran now, going on two years. However, sometimes it doesn't feel like that! The amazing thing about this, and it's so different from anything I've ever had over the years, is how it can crop back up again, and give you that same dreaded feeling that you haven't had in a while. That actually seems to kind of be the pattern with it, right when you are feeling good, then WHAM....here it comes again, right out of the blue. I think I have mentioned this before, but I also get heart palpitations (mostly PVC's) that act in much the same way. I can have them SO bad for a while, that I'm going to my cardiologist, visiting ER's, etc...only to have them completely calm down, kind of out of the blue. That is why, when they come back up again, it sort of shocks my system and it starts all over again, because for a while, they dissapear. The speech thing is awful, because you are constantly aware of it. And, then I would bite my tongue alot (which, by the way, would definitely go in some kind of a pattern), also have the tongue twitching, and even jaw twitching, which would freak me out. With the jaw twitching, and speech problems, I thought it had to be bad, but it never developed into anything else but bad anxiety. The tongue twitching still comes around alot, and I just kind of get used to it, and don't let it bother me. I wish, though, that I could find a way to relax and not have these symptoms bother me so much. That is the key, really~~to how you REACT to the symptoms. I find that fighting them, or trying to get rid of them makes things worse, because then you are more aware of every one. What's best is to let them happen, and learn to live with them. Kind of the same thing with the PVC's. AMAZING to me how your body will do these things, and it feels so out of your control. Even though, it's obviously very much in your control. My family gets so frustrated with me, because from time to time, I still bring up the als scare, and they think I'm over it, and can't believe I'm bringing it up again. And, it's amazing how I suddenly seem to loose my common sense or good judgement, because I will start thinking, well, maybe those OTHER twitches were random, but NOW I'm having bulbar onset, etc. They ARE disturbing symptoms, to have my jaw moving, and feeling weird, tongue twitching, temple twitching, all of that~~but it never amounts to anything, and I have had it all. Anyway, good luck and hope to talk to you soon! Val

I have been away also for a period of time (twitch all over, every muscle,since 1/4/07 and am a doctor myself) and I totally agree with Val. As I am 54 now and already in this for two years, still walk for 12 km a day, ski like hell for 2 weeks, climbed the highest peak of Iceland last summer, I now believe I probably won't die of this thing.Having said that, it still keeps me occupied at least once a day. It is never away en I still get the creeps when I have a bad day and all the muscles of my right arm twitch after a heavy tennis match. Luckily I don't feel the most of the twitches anymore, but I can feel them around my elbow when I put my finger on it and I can always show them to others (which always causes a bit worried look in the eyes of collegues But I have also decided that I will not let this ruin my life like it did for the first six months. So hang on there, its there to stay, you never really get used to it but in the end you will learn to live with it.

My jaw symptoms are disturbing because my jaw is getting spasms, it's the cramp component of cramp/fasciculation syndrome I suppose. But really it is just like getting cramp anywhere else except with the jaw it affects speech. On the bonus side I have not been getting the cramps in my hamstrings I used to, so these things move around. Apart from the general fatigue that comes from not sleeping enough, I reckon the cold weather could have something to do with it, it hardly helps. I guess I should wear a scarf when I go out on icy mornings.