Questioning New Symptoms: Scared

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InvisibleItches

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Well, I had a pretty good weekend and thought maybe I was getting better. Boy was I wrong. Sunday night all of my symptoms came rushing back. Especially this feeling of something stuck in my throat. I've received great information and insight from everyone here, but I have some new information about my case. And I hope that it doesn't make it more serious. I'm really scared again and think that perhaps this is what I feared, especially with the recent developments. Here it is:I think this is the start of ***. When I move my tongue, I can see the tongue muscles in my throat move. Also, when I open my mouth and stick my tongue out, it twitches on its way back in. Also, I'm now able to stick my tongue out further then ever before, this started back when my mouth symptoms started..... Even scarier, I can now stick my tongue back in my mouth further then ever before, literally the tongue can retreat all the way to the back of my mouth, almost down my throat, which is horrifying. Mind you, this is not normal -- and it is especially not normal for me. Even before this scare, I checked my tongue often last year over another kind of scare, and my tongue didn't behave this way. I think my tongue muscles are slowly dieing off and causing this. Which is also causing the feeling of something stuck in my throat. Actually, I'm now certain that this is causing the main in my throat and the constant feeling that something is stuck there. It has to be my tongue muscles... :(:( this is really really scary And I'm once again completely horrified. I don't know what to do. Is this really the start??
 
Gosh, where should I start? Right - what you describe is the opposite of what would happen in ALS.Ability to protrude tongue more than before is most likely result of stretching your tongue which you have now more control over. Many people cannot do certain actions with tongue like pulling it and make a "pipe" and so on but it comes with training which is your case (and also you are anxious and thus push with greater power)WIth ALS, your tongue would NOT be able to protrude as usually, it would not go so far due to weakening of the glossal muscles.As said many times before, fasciculations of tongue are important only when happen ON RESTING TONGUE. If you stick it out, it will twitch. To asset tongue fasciculations, the tongue has to be held still with mouth open.Check with an ENT, I am sure its not neurological.
 
The nasty things don't come and go- "I had a good weekend". There is no good and bad days. What ever you were doing this weekend, do more of it!
 
Thanks TwitchyMD and MsMaverick,I guess that makes a lot of sense...The fact that I can do things with my tongue, like stick it out, poke it side to side, and push it far back in my mouth is a sign that I have muscle control over it. However, it is scary and new, being able to push my tongue all the way back into my mouth, touching the thing that hangs down from the roof of my mouth, and it seems like it can recede all the way down my throat. This was making me think I'm losing my muscles there. TwitchyMD, my tongue twitches after I stick it out and then return my tongue to my mouth to view it rested. Also, my lips and chin having been twitching a little lately.
 
no problem, glad I can help. Regarding tongue twitches, do not stick tongue out. Just open your mouth and watch it but be carafeul as most people cannot hold tongue still and it looks bit like fasciculations, however its not. Once you are able to hold your tongue still, without occasional jerks which is very difficult (you must breath through your mouth), you can watch the surface. True tongue fasciculations are clear and repetitive flickering of very small area, usually few milimeters. However, if you are nervous or anxious your tongue would not be still and even neuro would have problems to notice it. The thing is, have you ever felt them on the resting tongue? If you are so interested, on youtube there is a video of tongue fasciculations in young male (not MND but mass at nm junction).I too was very scared at first when I got them but though its not common, they can be benign, its just less common. But still much more likely than MND starting this way. And even in the worst case, fasciculations in this area (chin, lips,tongue) are quite typical for Kennedys disease (I think you are man, women are just carriers) which is form of MND but its termed benign as it does not shorten your life /there is just some disability/. But thats just to give idea that even tongue with fasciculations which is not benign does not need to be ALS.
 
Also, one new scary development. I'm starting to feel a weird thing in my left hand, by the palm. It seems like it might be the start of some kind of dent forming. I can feel it when I hold something, and when I touch the same spot on the other hand it feels much different. Very worried.
 
ClearShakes, re-read every post you ever put on this board. I think you've complained about every symptom every human has ever had with the possible exception of ovarian cancer.You're a hypochondriac. Probably a 9.5 or higher on the 10-number hypochondriac scale. I'm pretty good at recognizing hypochondriacs because I'm one myself. Although I'd probably give myself an 8 or so.I've been having symptoms for 7 years, twitching for 3.5 years. Been cleared by a neurologist (just like you have if memory serves me correctly). Just stop thinking about this stuff for a while. Look up CBT - you need it bad. Talk to your doctor about medications to help you relax.The bad news is you have a serious anxiety problem. The good news is that if you treat it, it won't harm you.
 
I hate to sound like a broken record, but take it from someone who has recently suffered a BFS anxiety relapse--your symptoms are straight up anxiety. Yes, BFS makes you twitch. Doesn't matter where. Once you are cleared by a neurologist, you are fine. You are going to have to ride out this tongue thing until you are eventually desensitized to it. Time will show you that nothing is truly changing. I guarantee you will get over these symptoms and move on to something else in a few weeks time. It's what most of us do here. Just keep venting if it helps. We will talk you off the ledge as best we can. But ultimately, you have to do the work required to change your thinking. Take some anxiety meds if you need to. The beginning of this is a real bear and sometimes requires a little chemical assistance to get through.Take care!
 
thanks Twin and juliacristina2,I know I'm a hypochondriac. It sucks. But these feelings are real. Along with the mouth stuff, I've tripped on my own feet already 4 times today, kind of dragging my feet when it happens it seems. It is freaking me out. I had a clean EMG of my legs in MAY, but I don't know, you never know. I'm very athletic and I never stumble or trip, really. Maybe once in a blue moon. So I'm hoping this isn't the start of my loss of leg function
 
If the sequence of events for you was:1. Experience symptoms for longer than a few weeks2. Get a clean EMG in May3. Continue experiencing symptoms in JulyYou are 100% guaranteed to not have ALS.My friend, you need help. Many of us have been there. Have you tried CBT?
 
I'm making a rare appearance out of hiding just to say you are absolutely FINE, IT, just like I've told you in the pm's. Please, you're only 24 years old. Don't waste another minute of your youth or your precious life fretting about this ridiculousness. Everyone who has ever had bfs has gone through this crazy "bulbar" phase, which includes drooling, biting your tongue, supposed tongue fascics, choking, trouble swallowing, etc, and it is often accompanied by perceived weakness of some sort. Just look at Mario's signature line and you'll see what I mean. Seriously, you are hyper-focused on every little thing your body is doing, and it's freaking you out. So what if you trip over your feet? The weakness that we experience with bfs will cause that. It will ALSO cause swallowing problems and even drooling. The difference is, **S is NOT subtle, and it is absolutely something your neuro would have picked up on. If your neuro didn't find anything on exam, and your emg was negative. You DON'T have **S. Done. As everyone else has said, you have a really nasty case of hypochondria, and you need cognitive behavioral therapy and some good anti-anxiety medication. Your thoughts are making you crazy, literally. If you are visiting other sites for your information, I guarantee that is one of the prime sources of your anxiety. As a nurse, I can tell you first-hand that reading about symptoms of a deadly disease is going to cause you to believe you have that very disease. It's classic, text-book hypochondria, 101. There isn't enough reassurance we can give you on this forum if you refuse to listen and step away from Dr. Google, who is no doctor at all and needs his medical license revoked. Jack-a$$ has the worst bedside manner, ever. **S is a VERY rare disease. I've been nursing for over 20 years and I can barely count on two hands, the number of cases I've encountered. And I've NEVER seen a case in a 24 year old. That would be the rarest of the rare, and impossible in someone with a negative neuro exam. Please stop the madness. Blessings, Sue
 
Twin, Suzie Q, All,Hey guys! So, I took a few days off of visiting the forum. I had some good days and some bad days. The Bad:Tripped a few times while walking (mind you I'm very athletic and this scares the sh*t out of me).Weird feelings in my handsStill having trouble speaking, not pronunciating words as clearly as normal.Excess saliva.Bitting tongue when trying to speakLump in throatTongue buzzes, tingles, and tickles.SO, it has been like 2 1/2 weeks now of these mouth symptoms and they are still present. I'm doing better, but still really really scared. I've made some progress though, but I can't escape my fear that this is just the start of something horrible. I figured all these symptoms would last for a week or so, then leave, and I'd be back to my life. That hasn't been the case. And the MOUTH symptoms especially worry me -- but also this development of tripping over my feet a few times per week now. -Worried and Scared. Trying to get my life back.
 
The fact that you are reporting "excess saliva" as a symptom is 100% evidence that this is not ALS. Excess saliva is a sign of extremely late stage ALS. You are thinking that you have excess saliva because you read that as a symptom on the Internet and so now your body is making you think you have excess saliva.All your other reported symptoms can be caused by anxiety. I've been having trouble pronouncing things for 2 years now. I have TMJ which affects millions and millions of people. Why do you automatically assume that it is something sinister that also happens to be one of the rarest diseases?You are definitely in the top 3 anxious people I've seen on this forum in the 3.5 years I've been here. Please realize how serious of a statement that is. You went to a neurologist. He cleared you. The rest is nonsense.
 
juliacristina2,No doubt I have extreme anxiety over this, no doubt. It is controlling my life.However, all of these symptoms are very very real. And they are freaking me out. They are new. I don't know how to handle them because I keep thinking that they most be the start of something horrible.And today, all of my fingers are cramping up as well as my hands and they are extremely hard to use.This is just horrible :/
 
IT-Everyone knows your symptoms are very very real, because you are dealing with the same affliction as the rest of us. Nobody here believes our symptoms are imagined. All of your symptoms have been addressed by the community with assurance ad nauseam. You are aware that the real problem is anxiety/worry, but have you taken the steps to get that resolved? Have you visited a psych to explore options for medication, etc.? You keep posting the same questions and worries but I'd like to see your next post to be about how you plan to get your mental well being under control. You know the real problem is anxiety related, and yet you continually post the same fears and how horrible things are right now. Fix the real problem. Let us know how it goes.
 
Thanks Johnny,I understand and I apologize that I come back to BFS with every new development. I know I need help. I just get so scared with every small new thing. And I know I must sound like a broken record and I apologize to the community.
 
Thank You LisaLMThat is great advise and I plan on following it. Today has just been horrible because of these hand cramps and what not. I've never had them before. I had no idea they are part of BFS. :<
 

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