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Offline Reallyworried93

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Someone help :( als tongue fears!
« on: April 15, 2014, 01:04:58 PM »
Okay, I know I've posted loads of posts very similar but please don't get annoyed, as we all know,  the reassurance we all crave is never ending!
So basically, for those who haven't read my previous bulbar als obsessed posts, I have had a lump feeling in my throat when I swallow saliva for like 3/4 months on and off, teeth indents on my tongue and when I look at my tongue even at rest it's constantly twitching, I've been to my doctor about the twitching (he's an ent specialist) and he says that it doesn't look anything like als, although he didn't look at it for long in my mouth just looked at it quickly sticking out.
I moved on from this fear to brain tumour however now I'm back staring at my tongue every 5 seconds to inspect the twitching, I'm 20 years old.
I just wanted your opinion on what you would do? I can't shake this fear! I even feel like in slurring my words although everyone says I'm talking fine, could this be als? Or should I just believe my ent and move on?
I know I've had good advise before but I just feel like I need more, sorry. What should I do!!
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Offline Keyser Söze

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Re: Someone help :( als tongue fears!
« Reply #1 on: April 15, 2014, 01:09:57 PM »
Is the trembling constant or do you notice it from time to time? Als is very rear, especially on your age. I experienced a tingling tongue as well and I had severe fasciculations/twitches all over my body. Als does not subside. Once you notice the trembling, you should allready experience strenght loss and the trembling will only stop once your muscle is dead. So give yourself some rest for the next couple of days. See if the the feeling subsides and find your peace knowing it is not als when the symptoms are on and off.
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Offline ShawnW

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Re: Someone help :( als tongue fears!
« Reply #2 on: April 15, 2014, 01:15:13 PM »
Okay, I know I've posted loads of posts very similar but please don't get annoyed, as we all know,  the reassurance we all crave is never ending!
So basically, for those who haven't read my previous bulbar als obsessed posts, I have had a lump feeling in my throat when I swallow saliva for like 3/4 months on and off, teeth indents on my tongue and when I look at my tongue even at rest it's constantly twitching, I've been to my doctor about the twitching (he's an ent specialist) and he says that it doesn't look anything like als, although he didn't look at it for long in my mouth just looked at it quickly sticking out.
I moved on from this fear to brain tumour however now I'm back staring at my tongue every 5 seconds to inspect the twitching, I'm 20 years old.
I just wanted your opinion on what you would do? I can't shake this fear! I even feel like in slurring my words although everyone says I'm talking fine, could this be als? Or should I just believe my ent and move on?
I know I've had good advise before but I just feel like I need more, sorry. What should I do!!

First and foremost bulbar *** in a rare presentation of a rare disorder.  Second, you don't have to go looking for it, it will find you and find you quickly.  There will be no question something is seriously wrong in short order.  Next, 20 year olds so rarely get *** let alone bulbar onset.  So we are talking about lottery types of odds.  You should be more concerned about getting hit by lightening.

As for the "tongue twitching", everyones tongues "twitch" they are nearly impossible to keep still.  That's not what a specialist is looking for.  I won't describe what they are looking for because you will convince yourself that you have that.  An *** bulbar onset tongue has a look...and a specialist can tell within seconds.  As for the speech issues...trust me on this one from someone who has suffered this same fear...anxiety messes with your speech.  You become hyperaware, do numerous tongue and mouth testing exercises, live in a constant state of tension and wonder why we stumble on words, and our tongues and jaws hurt.

The chances of you having bulbar onset are so incredibly small that giving this a second thought is a second wasted.  Let it go.  You are ok.
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Offline Mvalachovic

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Re: Someone help :( als tongue fears!
« Reply #3 on: April 15, 2014, 01:19:46 PM »
I'm currently worrying about why my lips feel numb on one side so I'm not the best to give reassurance :-/. However, I do know that people with anxiety tend to clamp down with their teeth. We can't relax. The tooth indentations are nothing more than clamping and mouth shape and where your teeth happen to fall.
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Offline Reallyworried93

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Re: Someone help :( als tongue fears!
« Reply #4 on: April 15, 2014, 01:23:35 PM »
The twitching on my tongue is probably like once or twice every 30 seconds, no loss of strengh that I've noticed, I can't feel the twitching I can only see it when I shine a light in my mouth sometimes it don't seem to be doing it as much, but normally it's pretty regular.


Thank you for your response ShawnW, I know it's so rare :( I never noticed any of this until I came across als when I was convinced of another illness, ever since then I've been inspecting myself daily almost trying to convince myself I have it? (Obviously I don't want it)
Do you think an ent would notice als straight away? He said my tongue would look way more quivery and laughed at me for even knowing about it :/ he said 'I promise you don't have it, 100% you'll be fine!!'
Would other people notice if I was really slurring or? I know how silly I sound, I think I've just worked myself up so much about all this! X
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Offline ShawnW

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Re: Someone help :( als tongue fears!
« Reply #5 on: April 15, 2014, 01:28:25 PM »
The twitching on my tongue is probably like once or twice every 30 seconds, no loss of strengh that I've noticed, I can't feel the twitching I can only see it when I shine a light in my mouth sometimes it don't seem to be doing it as much, but normally it's pretty regular.


Thank you for your response ShawnW, I know it's so rare :( I never noticed any of this until I came across als when I was convinced of another illness, ever since then I've been inspecting myself daily almost trying to convince myself I have it? (Obviously I don't want it)
Do you think an ent would notice als straight away? He said my tongue would look way more quivery and laughed at me for even knowing about it :/ he said 'I promise you don't have it, 100% you'll be fine!!'
Would other people notice if I was really slurring or? I know how silly I sound, I think I've just worked myself up so much about all this! X

First, your tongue would be weak before fasiculations.  Can you lick your lips?  Can you tent out your cheeks on boths sides with your tongue?  Can you move your tongue around, up, down, left right?  Well if you said yes, those are not fasiculations you are seeing.  I can see the same thing in my mouth...about impossible to keep it at rest.  A "quivery" tongue is quite normal....so normal that I would say nearly everyone on the planet has a quivery tongue.  You are not trained to know what to look for in the mouth...you have no idea what you are looking at...just guessing.  Trust your doc...and yes an ENT should know what an *** tongue looks like.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline Keyser Söze

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Re: Someone help :( als tongue fears!
« Reply #6 on: April 15, 2014, 01:31:24 PM »
I am not annoyed, I have been down the same road as you, so I know the feeling. Als is an easy obsession to get out of your head, because the onset is normally very rapid and destructive. I noticed your first post regarding your tong was on march 3rd of this year. If you really had als, your tong would most likely be allmost dead by now, or heavily impeared. Als is usually deadly within 2/3 years. It starts from one point and moves on to another once that specific point is dead. If you had als, your disease probably would have moved on by now and your tongue would have been dead. Most people going to the doctor fearing als, come in looking like rag dolls. They can't stand on their toes or heels, can't grip anything between their index finger and thumb, and can't stand on one leg. Normally it is possible to diagnose als in 40 days after the first onset, solely based on clinical observation (most likely within 5 seconds from entering the neurologists office). So, can you stand on your toes and heels? --> yes, Do your symptoms subside from time to time --> yes, Did your tongue become impaired? --> No, Do you have any noticable strenght loss in any part of your body? --> no, So do you have als? --> No.
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Offline Pyr

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Re: Someone help :( als tongue fears!
« Reply #7 on: April 15, 2014, 02:22:41 PM »
OH, dear. I recently came out of this swing and I can tell you the ALS beast is bad.  Especially the bulbar fears.  I saw two neuros including a neuromuscular specialist who said not ALS.  I even convinced them to do a body EMG.  No ALS.  HOwever, I was having weird mouth sensations, tongue pulling, burning and involuntary swallowing (would wake me up in the morning and the reflex kicked in).  So I went to A THIRD neurologist who I asked to give me a tongue EMG right then and there.   Poor guy.  I literally took advantage of him with my anxiety.   We HA people go to extreme lengths to get the reassurance we need.  NORMAL.

YOu know what. I went to a FOURTH neurologist, who repeated the EMGS and said "small fiber neuropathy."    Guess what.  He didnt' even want to look at my tongue.  So sure and confident.  Didn't want to even hear about my tongue complaints.  You know why -b/c bulbar ALS presents with slurring and you can't swallow even water without it dribbling and going all over.   A specialist can tell bulbar within seconds of your initial conversation and complaints.

That still didn't help me.   Because I still have the burning mouth, tongue, tonsil, jaw, ear pain in the trigeminal nerve distribution, instead of listening to a SPECIALIST who told me whats causing it, I am googling tumors, aneurysm, etc.  EVEN THOUGH I HAD 3 BRAIN MRIS.

I tell you this b/c we are all very very sick with this HA.  I see a psych every week because I cannot emerge from what has been 9 months of HELL.   He tells me that neuro symptoms share the same pathway with psych symptoms so thats why a lot of us have orofacial pain, fibro, burning, twitching, etc.    You could just have an aggravated nerve in the facial region from stress, dental, of BFS (see below) etc.

I just feel so bad for you b/c I was at my WORST in the ALS phase and although not cured, I would not want to relieve Christmas 2013 ever again. 

YOU DO NOT HAVE BULBAR.  Google benign fasciiculation syndrome  (BFS)and go to that forum and you will see a TON of anxious worriers like you with the same fear. I was one of them months ago.

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Offline themegahypo

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Re: Someone help :( als tongue fears!
« Reply #8 on: April 15, 2014, 04:30:51 PM »
Bulbar Is fast progressing. If you had bulbar onset for 3/4 months, you'd know. 100 percent of the time.
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Offline Reallyworried93

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Re: Someone help :( als tongue fears!
« Reply #9 on: April 15, 2014, 05:30:07 PM »
Ah thank you to you all for replying, reading what you have all written has at least calmed me down for now.
It's weird because the rational part of me already knows what you are all saying however the other part of me just thinks 'what if' and for some reason I have the need to prove something is wrong.
The other week I forgot about als and then was convinced I had a brain tumour also :( it's my other biggest fear so in my head I was like 'well now it all makes sense, a brain tumour is causing this'
Your all right, I can do all them little self tests, I don't have any trouble with tongue movement apart from my speech seeming slurred to me but not anyone else! But for some reason I can't stop staring into my mouth, it's got to the point where at work I'm even sneaking off to the toilets to look in the mirror to check for twitches :(
I think I do need to do what you lot said and realise how fast bulbar progresses so if I did have it I would have more signs by now:
I have had a look at bfs before, but with the tongue a lot of people say they can feel there twitches? I can't for some reason which makes me worry more about als :(

I know I'm being ridiculous keep even investigating it myself and that I should believe the ent doctor,  it's not that I think I know more it's just I always worry they haven't listened properly! I know the other sensations like lump in throat and stuff is linked to anxiety, but put it all together and you've got a very anxious girl here!
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Offline Hypo84

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Re: Someone help :( als tongue fears!
« Reply #10 on: April 15, 2014, 05:39:18 PM »
So you think you have rarest form of very rare disease which is even more rarely seen in young people. Also, it is extremely fast progressing disease.

I would believe more if you have said that you are alien than that you have bulbar als.
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Offline Reallyworried93

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Re: Someone help :( als tongue fears!
« Reply #11 on: April 15, 2014, 05:46:27 PM »
Ah I know I know, it's the horror stories you hear of young people getting it (although extremely extremely rare)
Plus, I'm not rational enough to start fearing diseases that are more likely, I seem to go from one extreme to the other ... Lymphoma to Brain tumour to als!
Nothing about this obsession makes sense to me either x
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Offline ShawnW

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Re: Someone help :( als tongue fears!
« Reply #12 on: April 15, 2014, 05:49:35 PM »
Ah thank you to you all for replying, reading what you have all written has at least calmed me down for now.
It's weird because the rational part of me already knows what you are all saying however the other part of me just thinks 'what if' and for some reason I have the need to prove something is wrong.
The other week I forgot about als and then was convinced I had a brain tumour also :( it's my other biggest fear so in my head I was like 'well now it all makes sense, a brain tumour is causing this'
Your all right, I can do all them little self tests, I don't have any trouble with tongue movement apart from my speech seeming slurred to me but not anyone else! But for some reason I can't stop staring into my mouth, it's got to the point where at work I'm even sneaking off to the toilets to look in the mirror to check for twitches :(
I think I do need to do what you lot said and realise how fast bulbar progresses so if I did have it I would have more signs by now:
I have had a look at bfs before, but with the tongue a lot of people say they can feel there twitches? I can't for some reason which makes me worry more about als :(

I know I'm being ridiculous keep even investigating it myself and that I should believe the ent doctor,  it's not that I think I know more it's just I always worry they haven't listened properly! I know the other sensations like lump in throat and stuff is linked to anxiety, but put it all together and you've got a very anxious girl here!

It's because you are seeing normal movements of the tongue...not twitches.  You can try to rest the tongue inside your mouth...and with the slightest and I mean the slightest movement a part of the tongue moves...looking like a twitch.  I would highly doubt what you are looking at is a fasic of the tongue. 
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline Mookie15

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Re: Someone help :( als tongue fears!
« Reply #13 on: April 17, 2014, 06:32:39 PM »
I am having the same symptoms. Slurring of speech, although every one around says no, and muscle twitches everywhere all over my body.  Like popcorn popping.  No weakness.  Few cramps here and there but that's it. I have 3 children all under 8 and for the last 5 months my fear of *** has consumed me.  Every waking moment of every waking day I obsess about it.  Test my strength, walk only toes, heels, do push ups, read from a book and record myself.  You name it, I've done it.

I'm in same boat as you and don't know how to get out of the cycle.  Met with my psychiatrist today and they upped my lexipro to 20mg.  Said I'll feel much better in 30 days.  Don't know that I have antihero miserable 30 days left in me. 

I have read all the posts in this thread and it has made me feel a bit better, with the exception of the twitiching. It just won't stop.  Gonna try the lexapro and see how it goes. 

I'm 43 make btw.   No weakness whatsoever. 
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Offline ShawnW

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Re: Someone help :( als tongue fears!
« Reply #14 on: April 17, 2014, 08:28:49 PM »
I am having the same symptoms. Slurring of speech, although every one around says no, and muscle twitches everywhere all over my body.  Like popcorn popping.  No weakness.  Few cramps here and there but that's it. I have 3 children all under 8 and for the last 5 months my fear of *** has consumed me.  Every waking moment of every waking day I obsess about it.  Test my strength, walk only toes, heels, do push ups, read from a book and record myself.  You name it, I've done it.

I'm in same boat as you and don't know how to get out of the cycle.  Met with my psychiatrist today and they upped my lexipro to 20mg.  Said I'll feel much better in 30 days.  Don't know that I have antihero miserable 30 days left in me. 

I have read all the posts in this thread and it has made me feel a bit better, with the exception of the twitiching. It just won't stop.  Gonna try the lexapro and see how it goes. 

I'm 43 make btw.   No weakness whatsoever.

If you can do the things that I listed above, then your "slurring" isn't caused by ***.  A good neurologist wouldn't even do an EMG on you unless you have failed that test.  Not to mention 8 months of symptoms?  How long have you noticed speech issues?  Everyone means something different when they say slurring...but *** slurring sounds like you are drunk and trust me people notice that.  I don't know if you have been to Benign fasciculation syndrome forums but it might benefit you to read the posts there...specifically the stickies.

Problems with speech are common with anxiety for a variety of reasons one is a dry mouth...second is hyperawareness causing you to stumble...taking something automatic and complicating it by analysis, another is mouth tension...not to mention self testing of the mouth that can make it all worse.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

 

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