Old 10-21-2015, 10:29 AM #1 (permalink)
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Default I can't believe I'm back here again

Hello All.

I honestly can't believe I'm posting here again. I would have posted in my old thread, but it's closed now. I had an EMG/NCV on all my limbs, and have been cleared of ALS. BUT! My face, and tongue were not tested, and I now fear Bulbar ALS. Here are my symptoms: I feel like I am having a difficult time speaking. Nobody else notices it, and it isn't a "slur," Its like I am stumbling for words sometimes. My tongue twitches sometimes (I can feel it. Like a pop sensation) I can also feel this sensation in my throat. I can feel a "Pulse" beat in the roof of my mouth with my tongue and finger sometimes. I have neck pain when I chew. Its the muscles in the back of my neck. I know there aren't any chewing muscles there, but It still concerns me greatly. I'm starting to have breathing problems again. That started a few weeks ago, but subsided. I chalked it up to anxiety, but it started back this morning. Swallowing is fine, as of now, but I fear that will go soon. I realize you all aren't Docs, but I know you all know ALS. What are your thoughts about potential Bulbar Onset? Just as a reminder. I'm a African American male, that just turned 31 back in August. I know that ALS is rare, and most people that I have seen on this forum, seemed to start with limb onset. Is bulbar more rare? Thank you for your time.....
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Old 10-21-2015, 10:37 AM #2 (permalink)
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Default Re: I can't believe I'm back here again

As always with concerns call your doctor.
Now bulbar upper limb and lower limb occur with about equal frequency but bulbar tends to be in older patients

Nothing you are describing sounds familiar. Tongue twitches like other twitches mean nothing. Problems you notice and others do not are not typical of ALS speech issues
Neck pain when chewing does not sound familiar either
And breathing again ? Thought your doctor told you anxiety? Certainly that can be a cause and if you were just checked out ALS breathing issues do not occur overnight nor do they get better once they begin

Last edited by Nikki J : 11-06-2015 at 11:21 AM
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Old 10-21-2015, 10:44 AM #3 (permalink)
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Default Re: I can't believe I'm back here again

My husband had bulbar- the EMG tested only his limbs- and ALS showed up there even though his limbs were not yet affected. No sensations as you described. Relax- this is not bulbar ALS or it would have been seen in the EMG.
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Old 10-21-2015, 10:47 AM #4 (permalink)
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Default Re: I can't believe I'm back here again

Thank you, Nikki, for your reply. I did believe it was anxiety that caused my breathing problems. It's just scary, because I haven't been as bad as I was with my anxiety since my EMG; Although, I still think about Bulbar everyday. It was just weird that my breath seemed difficulty today. One thing I promised myself if my EMG was clear, was to stop smoking again. But since last week, I have continued to smoke heavily, because I think I have Bulbar onset. Also, heart palpitations... I'm a complete wreck. Haven't cried in a while, guess that's an improvement...
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Old 10-21-2015, 10:51 AM #5 (permalink)
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Default Re: I can't believe I'm back here again

Thank you, Cheerleader. Your user name definitely precedes you! I have to get out this funk. My depression is causing me to miss my son's life. He crawled for the first time yesterday, and I wasn't there, because I was off feeling sorry for myself. How pathetic am I!
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Old 10-21-2015, 02:24 PM #6 (permalink)
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Default Re: I can't believe I'm back here again

I have a question. With Slurred speech in Bulbar, how does it typically start off? Do you just wake up one day, and you slur?
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Old 10-21-2015, 02:34 PM #7 (permalink)
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Default Re: I can't believe I'm back here again

In bulbar ALS, slurring occurs because your tongue becomes paralyzed and just lays there, useless. (Look at your tongue in the mirror and move it around.) With Bulbar ALS, everybody can tell you're slurring. It doesn't get better if you try harder.

P, two really smart and experienced members have told you "Relax- this is not bulbar ALS." So it's time to go, P, and enjoy your new baby. See your doctor to find out what the problem might be. The EMG shows it is not ALS.
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Old 10-21-2015, 03:56 PM #8 (permalink)
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Default Re: I can't believe I'm back here again

Atsugi. Thank you for your kind words. I know your truly care, I can tell by your dedication to the forum. My only concern was that my EMG wasn't done on my tongue or face. Although cheerleader's husband EMG caught his Bulbar onset in the limbs, I was under the impression that Bulbar has it's own set of testing that have to be done separate, at the site. Am I wrong? Would an EMG done on all my limbs, catch bulbar onset? Sorry for the multitude of questions. Anxiety is tough to deal with.
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Old 10-21-2015, 04:30 PM #9 (permalink)
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Default Re: I can't believe I'm back here again

Your anxiety is affecting your life--and your ability to reason. If your GP doctor thought for a minute that you might possibly have bulbar ALS, she would have checked for it. But I can't say what she did or didn't decide, of course. You must ask her.

Let me repeat that the folks who answered your concerns are really smart. Much smarter than I am. You can take their advice to the bank. Actually, take it to your doctor. Frankly, your anxiety and depression would be the first thing I would look into. If your GP doctor is not proactively treating that, she needs to.
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Old 10-22-2015, 06:34 PM #10 (permalink)
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Default Re: I can't believe I'm back here again

PM,
This is anxiety. It is not bulbar or any other ALS. The tests you have been given are the right, best tests. Not every region needs to be tested in an EMG. You had symptomatic regions tested. They were negative.

But read your own words:
>Swallowing is fine, as of now, but I fear that will go soon.

Do you see how that sounds? You've had negative tests but you don't believe them. So your body is producing new symptoms for you to respond to.

You're smoking a lot, which heightens anxiety and the physical manifestations of it. You have palpitations, another manifestation of the increased pulse/BP your smoking contributes to, as well as anxiety.

The Internet will never give you the hug your son will. Call your primary doc and start treating your health anxiety before it becomes a [poor] substitute for the life most PALS would give a great deal for the opportunity to have back.
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Old 10-22-2015, 08:51 PM #11 (permalink)
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Default Re: I can't believe I'm back here again

So well said Laurie.
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Old 10-24-2015, 05:10 PM #12 (permalink)
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Default Re: I can't believe I'm back here again

Well, as I predicted, I've started chocking on liquids... Sometimes it goes down the wrong pipepipe, if I don't swallow hard enough. At this point, I'm just looking for the right doctor to see. I'm seen mentioned ENT and speech therapist. Which one do I need to see? Or.should I go back to the neurologist that gave me the EMG?
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Old 10-24-2015, 06:30 PM #13 (permalink)
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Default Re: I can't believe I'm back here again

Re-read Laurie's (lgelb) post.

Now go get your anxiety looked at. You definitely need help, but not for ALS. 8^|
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Old 10-30-2015, 09:34 AM #14 (permalink)
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Default Re: I can't believe I'm back here again

Sorry to come back. Can someone explain excessive salvia, as it relates to ALS. I'm experiencing a lot of salvia. Is the excessive salvia in ALS patients due to inability to swallow, or something else?
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Old 10-30-2015, 09:41 AM #15 (permalink)
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Default Re: I can't believe I'm back here again

You've been thoroughly cleared of ALS and you're full of anxiety.
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