Old 02-14-2011, 06:11 PM #1 (permalink)
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Default tongue symp

I know I know I post here freq. but for the past couple of months my tongue wiggles around if i stick it out. I also noticed the right side of my tounge has what look like teeth endentions in it. I'm convinced this is AlS. I have to many symptoms and now its becoming a realization for me. Im 18 so its just to hard to believe but my tongue symptoms are very obvious now.

I'm not really that worried because ive come to terms with the disease. I just need some advice.
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Old 02-14-2011, 06:30 PM #2 (permalink)
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Default Re: tongue symp

Gregory, does your tongue still work? Can you still say "Sally sells sea shell by the seashore"? If so then put your tongue back in your mouth and get another hobby.

"I'm not really that worried because ive come to terms with the disease."
Sheesh, now I've heard everything
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Old 02-14-2011, 06:41 PM #3 (permalink)
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Default Re: tongue symp

Seriously Gregory, What you've described means nothing in terms of ALS. If you can't just close your mouth and forget about it, there are plenty of older posts here on this forum you can search and read up on.

In a nutshell, your doctor cleared you, you're 18, you're not experiencing weakness. You're going to have a very fearful unhappy life ahead of you if you allow yourself to become resigned to having a terminal disease with no illness to even show for it. That is one of the most amazing statements (and not in a good way) that I've read in a long time. Come to terms with what? Have you come to terms with letting anxiety overtake what could be an interesting productive life?

Suggestions:
Get a hobby that does not involve internet medical research
Get great grades and consider what your career will be
Find a girlfriend, or date around
Volunteer for a charity organization
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Old 02-14-2011, 06:41 PM #4 (permalink)
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Default Re: tongue symp

Quote:
Originally Posted by BarryG View Post
Gregory, does your tongue still work? Can you still say "Sally sells sea shell by the seashore"? If so then put your tongue back in your mouth and get another hobby.

"I'm not really that worried because ive come to terms with the disease."
Sheesh, now I've heard everything
no one believes me i feel like im going crazy.
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Old 02-14-2011, 06:50 PM #5 (permalink)
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Default Re: tongue symp

Gregory,

ALS starts with weakness, atrophy and loss of muscle mass. You have not described having any of this. That is why no one takes you seriously, its not that they wish you ill (quite the opposite). If you tongue, while at complete rest in your mouth, has wiggles in the dead center of it, then that is considered fasciculations. And even if you do have true fasciculations, that in and of itself is not diagnostic of ALS. If it were, then the doctors would not have to do so many tests for people who do have this.

Do yourself, and anyone who cares about you a BIG favor, and look for ways to manage, and get past your fears. Life is too short. If you've got something physically pathological brewing, and you're convinced of it, then you need to go see another doctor. We here on the forum can only offer our advice which comes from what we've learned to be true. Thats all. We're not trying to add to your anxiety, there's just nothing else to say when a person is not describing something worrisome.
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Old 02-14-2011, 06:57 PM #6 (permalink)
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Default Re: tongue symp

Gregory, you are not going crazy but you are obsessing over a disease that you don't have. I'm not a doctor but I have not eaten in over a year or spoken in almost two years so I think I can say this, ALS is not about what something looks like or feels like, it's about how it functions. If your tongue works fine then what it looks like is not important.

Take Rose's advice and find a productive way to spend your time.
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Old 02-14-2011, 07:10 PM #7 (permalink)
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Default Re: tongue symp

The photo does not show atrophy that I can see, but photos are difficult at best. I would love to be able to stick my tongue out that far by the way! However, my point is, if it bothers you, a doctor, specifically an ENT can very easily see if you have any sort of weakness upon exam. Make an appointment. You don't need to go to a neurologist, ENTs have training more than enough to see any tongue atrophy or weakness.

Now personally, I'm not going to keep responding to this thread. I've given you my very best advise, and don't see anything else I can add to what has been said. I sincerely wish you the best of luck, and hope you're able to take the necessary steps to get past this. By this, I mean get some answers from a doctor who will take time to explain why you're ok, or what it is that might be wrong. good luck to you.
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Old 02-14-2011, 07:23 PM #8 (permalink)
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Default Re: tongue symp

What you need is a good psychiatrist.
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Old 02-14-2011, 08:49 PM #9 (permalink)
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Default Re: tongue symp

hi greg . .you say you have had widespread twitchin happening . . Well i am lead to believe that this actually points away from als . . Apparently it tends to be more focal . -Secondly you have not mentioned the one symptom that is most common with als . . Weakness . . Genuine weakness where you cant carry out something that you have done all your life with ease. . . Third your age . . Think have only ever heard of a couple of teens diagnosed with als . . Its almost unheard of . . your at a great time of life now my friend . .best years of your life . . Please dont waste it worrying about something that would be astronomically unlikely . . And please try be a little more tactful . . To say that you have come to terms with it is a little insultin to the guys here that battle to do things that you and i take for granted . ! Its up to you to go and enjoy life my friend . . I wish you good luck and god bless . . Alex
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Old 02-14-2011, 09:40 PM #10 (permalink)
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Default Re: tongue symp

Gregory I can only speak for myself but when my Neuro's examine my tongue they do not want me to really stick my tongue out to far. Your Tongue is a muscle when you stick it out you are exerting it and it is going to have some natural "wiggling" from the stress you are putting on the muscle as you extend it out of your mouth. It is safe for you to put ALS out of your mind. It is evident to all of us that you do not have it. That should make you happy! It would make me happy. Please do not "talk yourself" in to having the disease. If I were you I would see a Dr. about your inability to conrol your irrational thoughts. I am being sincere you do not want to go through life suffering from that type of anxiety.
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Old 02-14-2011, 09:47 PM #11 (permalink)
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Default Re: tongue symp

These guys are right, Gregory. I suffer from some pretty bad anxiety myself and let me tell you from first hand experience- it stinks!
There are so many days that I go to bed feeling like a piece of crap for letting myself waste another day out of fear. I am reminded every single day by my PALS and all the PALS and CALS here, that it is the dumbest thing to do- to take advantage of life.
But I still allow anxiety to rule my world and i miss out on so much. It is truely heatbreaking. No, I do not have ALS, or symtoms that may or may not be related to ALS, but I do have anxiety and know how it can ruin your life.
Why dont you try getting your anxiety under control FIRST. If you do that, then it will be easier to deal with any medical issues you may or may not have. And look at it this way, you may find that your symptoms completely disappear once your anxiety is under control. If not, then you will have better coping skills to deal with whatever your dr finds.
Good luck to you
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Old 02-15-2011, 03:18 AM #12 (permalink)
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Default Re: tongue symp

Gregory, I was where you are. A bit older but otherwise the same - twitching all over for nearly 4 years including tongue in the last 6 months.
At first - teeth marks are not atrophy!
If it was atrophy, your tongue would not go out straight..but yours does. With tongue weakness (which results into atrophy) it would deviate to the weaker side.
Twitching when stuck out is nothing you can be worried about. It is twitching when completely at rest which is what the neuros are looking for. And still, it can be benign.
There is another thread from sj686 (sorry I know this is not exactly right ), another young male with widespread twitching and even tongue ones. He got all clear.
You are 18, chance of having ALS are nearly impossible..combine it with atypical presentation where fasciculations precede weakness for 3 years...I think that much more likely is that the world will end in 2012 than you having ALS.
Work on anxiety...I did that and it helped a lot. Use meds for decrease twitching (carbamazepines or neurontin) and this will help your anxiety as well.
Good luck
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Old 02-15-2011, 12:05 PM #13 (permalink)
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Default Re: tongue symp

Al, can we kill the tongue pic please? Now to the op, you don't have any symptom of ALS so go away happy.
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Old 02-15-2011, 02:13 PM #14 (permalink)
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Default Re: tongue symp

I don't think we need people posting pics of various body parts here. Unless somebody wants to see one of my scrawny white atrophied butt.

AL.
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Old 02-15-2011, 03:20 PM #15 (permalink)
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Default Re: tongue symp

Quote:
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I don't think we need people posting pics of various body parts here. Unless somebody wants to see one of my scrawny white atrophied butt.

AL.
I'll volunteer to moderate the posting of body parts, but it would have to be truly amazing to make the cut. Sorry Al, your scrawny white butt wouldn't make it.
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