Old 05-16-2018, 12:24 AM #1 (permalink)
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Default Speech problem and paralyzing feeling on my tongue

Good to see you everyone

First of all, please understand my lack of English skill because I live in Korea and I am a male and 29 years old.
ALS is very very rare disease and the ALS with the Bulbar onset is rarer so that I cant find and receive the proper comments on me regarding initial Bulbar symptoms in the Korean community, for which I request the comment from the someone who really knows about it.

My first symptom was started at 2018-02-03. At that time, I firstly feel my tongue is kind of heavy?? and cannot move naturally when talking with someone. I have the problem with some word which includes s, n.

Early of march 2018, which is the 1 month later after feeling first symptoms, I feel my tongue feel kind of pain like there is electric spark along with the boundary of my tongue. And, I notice that I can do s, n that is the pronounce in which I cannot do in 1 month ago but I cannot do the different pronunciation of latter of L and d. Now, I can do "s", "n", "l", and "d". But I cannot do the different letter.

April 24, my EMG result on the right arm and leg is perfectly normal. But I dont do EMG on my tongue.

Now, (3 and 14 days later after first symptoms) the other person cannot notice I have the speaking problem. And I am going to visit the university hospital in order to take the EMG on the tongue directly at end of May.

As far as I know, bulbar symptoms progress really rapidly compared to ALS starting with the weakness on the arm and leg. And, I think 4 months is not short period to show the clear clinical symptoms if I am really bulbar onset of ALS.

In summary,
Early of February, I feel the speech problem until now
Early of March, I feel the numbness on my tongue until now. (I cannot explain the exactly, burning feeling, electrical something along with the boundary of my tongue)
Now (after 3 month 14 days later), I am perfectly normal except the tongue problem. And, the other person cannot notice I have the speech problem yet.

I will wait for your advice. Thank you very much
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Old 05-16-2018, 12:27 AM #2 (permalink)
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Default Re: Speech problem and paralyzing feeling on my tongue

You perceive speech problems that have come and gone, and changed. And no one notices a problem but you? I would not subject yourself to a tongue EMG. No one here will think that you have ALS, bulbar or otherwise.


Speech/tongue issues worsen with anxiety, fatigue, stress, allergies and dry air. I would look to these first.


Best,
Laurie
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Old 05-16-2018, 12:40 AM #3 (permalink)
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Default Re: Speech problem and paralyzing feeling on my tongue

Dear Laurie,

Really really thanks for the very very rapid replay.
Although no one noticed yet my speech is slurred, I feel really heavy of my tongue which leads to the abnormal movement of the tongue.

I dont know how long I am supposed to worry about ALS. The neurologist that I meet advice to me that if you dont have series problem until 5 month since the first symptoms, ALS can be ruled out.

Is it true??

Again, really thank you for giving the advice
J. W. Han
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Old 05-16-2018, 01:32 PM #4 (permalink)
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Default Re: Speech problem and paralyzing feeling on my tongue

Hi JW,

It's always nice to hear from someone in Korea. I was there several years, when the Olympics were there in 1988. Really enjoyed the country and the people. I still eat Korean food here in the US.

I read all your posts. I don't see any reason to worry about ALS. When you describe your tongue, it has a lot of feelings. That makes me think something else is happening.

Ask your general family medical doctor to fix this tongue problem, but don't think about ALS. I see no reason to think about it.
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Old 05-16-2018, 08:18 PM #5 (permalink)
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Default Re: Speech problem and paralyzing feeling on my tongue

Dear Mike

It is really good to hear your story about Korea. Actaully, I am born in 1988 which is the exact year that you visited Korea. We seem to have something connection. I really hope to re-visite Korea and see how Korea very rapidly developed by inventing the ALS medicine to return back to the period that you are really healthy.

As my understanding from your comment, I am not supposed to feel anything on my tongue except the uncomfortable movement if I have the real ALS because you described " when you describe your tongue, it has a lot of feelings. That makes me think something else is happening"

Then, If I have a lot of feelings on my tongue, which gives rise to the unnatural movement of the tongues, does it rather originate from the other tongue problem not but ALS?

Thank you for giving the construction comment.
God bless you

JW
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Old 05-16-2018, 10:25 PM #6 (permalink)
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Default Re: Speech problem and paralyzing feeling on my tongue

JW,

Maybe you know this, or maybe you don't, so I will say it anyway.

ALS is not a muscle disease. It is a brain disease. ALS destroys only a certain kind of nerves in the brain. ALS destroys the nerves in the brain that send a signal to a muscle in the body. So because the nerve is destroyed, it cannot send the "go" signal to the muscle.

That's why the muscle doesn't work--because it did not get the signal to move.

Since the muscle is getting no signal, it lays there, forever. It is flaccid, useless, paralyzed.

Notice that the muscle doesn't hurt. It is not exhausted from working hard. It isn't numb, and it isn't painful. The muscle feels fine, just like it always did. It just cannot move because its nerve in the brain is destroyed.

You said "numbness on my tongue...heavy feeling...burning feeling, electrical something." That's not ALS.

So don't worry about ALS. Look for something else.
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Old 05-17-2018, 12:57 AM #7 (permalink)
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Default Re: Speech problem and paralyzing feeling on my tongue

Dear Mike

Thank you for very wealth information.
I don't know whether I am eligible to escape the ALS phobia or not, though, I will struggle to return back to normal life. And, when my symptoms drag me into ALS phobia, I am going to read your comment so as to overcome the ALS dread. Also, I will check my symptoms with the otolaryngologist.

Again, thank you

From on the other side of the earth JW
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