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bigguy

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Hi all,

I have been having some strange symptoms. The right side of my mouth droops slightly lower than the left when I smile or make facial expressions and the right back side of my tongue feels sluggish and thick even at rest. I gradually started slurring my speech about a month and a half ago (I noticed it even then) and it has gotten worse since, as people now ask me to repeat myself a few times a day.

I can still move my tongue rapidly around my mouth and have no trouble "tenting" my cheeks with my tongue. Blood tests have come back normal, CT and MRI of the head have also both come back normal. An EMG/NCV performed on my right and left arms and my left thigh also came back normal except for mild polyphasia in the left first dorsal interosseous. He even stuck the needle in my orbicularis oris part of my mouth where my mouth is drooping and got nothing. My tongue was not EMG'd.

I'm only 19 and have no family history of ALS yet I am seriously beginning to consider that I may have bulbar onset ALS. I'm going to go in for another EMG later this week. Should I ask him to poke directly in the area of my tongue that's feeling weird? Or can the EMG needle poke anywhere in the tongue and elicit abnormal findings?

Thanks for your time.
 
If you're being followed up by good testing and a competend neuro, you're right where you need to be. Trust him, he knows a lot more about your situation than we do! There are many more things than ALS that cause slurring and the like. Let the docs sort it out.
 
So let me get this straight:

First you had limb-onset ALS with left arm issues. Then you had thoracic-onset ALS with your breathing issues. Now you have bulbar-onset ALS. You hit the trifecta and are the first person in the history of ALS that has had all three of those regions showing symptoms simultaneously at the beginning of ALS. Congratulations!

You do know that you have run-out of ALS-onset regions (it's either limb-onset . . . bulbar-onset . . . or thoracic-onset). I guess you haven't really said anything about your legs though, so please start another thread and tell us about the ALS symptoms you are having in your leg(s).
 
Sounds like you have a fabulous and thorough neurologist. As Beky said, leave it to your doctor. If he knows your history, then he will know where you require the EMG. No harm in asking though, if that's what you want. It's your body.
Best of luck and I hope it all goes well.
 
Thanks a lot Alyoop, Wright, and Tokahfang for replying. Wright, yes I do realize I sound pretty ridiculous at this point but all my other symptoms that I previously mentioned in other parts of my body have resolved whereas the slurring has been present and still is present since a few weeks before I made my first post. As I understand it, bulbar ALS typically presents with slurred speech and then progresses to swallowing difficulties. I am not having any trouble swallowing, my tongue is not deviating to one side upon protrusion, and I think I'll just leave identification of tongue fasciculations to my neurologist when I see him because it's hard for me to distinguish between me not being able to relax my tongue and actual fasciculations in that area.
 
I also had a leg cramp in my left gastrocnemius (calf) about a week ago, I don't know if that's significant or not. I'm attributing it to the fact that I'm at college now and instead of sitting on the couch I have to walk 2-2.5 miles to and from class daily.
 
It sounds like you've read a lot about ALS onset and now you're anticipating and imagining symptoms that you probably don't actually have. As I said to another person with similar concerns here, if you're looking for symptoms, you'll find them. Give yourself a break from the computer and focus on things you enjoy. Let your doctor decide if you actually have anything worth worrying about. My hunch is that you don't. Take care.
 
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