Questions about Bulbar Presentation

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nvmets10

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I've spent a lot of time reading these forums of late and just want to say how amazed I am by the kindness and openness of members here, especially given the unbelievable hardships endured. It's remarkable.

I'm hoping to learn and understand more about bulbar onset ALS. After experiencing the usual full body twitches most seem to seek advice about, as well as arm/leg weakness, I saw a neurologist for an EMG on my limbs. She didn't see reason for concern. But in the week since, there's also been a change in my voice - noticeably raspier for no logical reason (no cough, sore throat, congestion) - along with new twitching on the right side of the jaw (the same side I've felt periodic discomfort in my neck). And while there's been no major difficulty swallowing yet, it hasn't come as easy during this period as in the past (or at least I'm noticing it more).

So I'm curious what the initial presentation generally seems to be with the bulbar form. Would it start with slurring or might it just be a vocal issue, and would tongue atrophy precede them? What's the best test to diagnose - would a neurologist still be the best person to address throat issues?

Thanks in advance for the advice and guidance.
 

KarenNWendyn

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Did the neurologist find weakness in your limbs? If you have been symptomatic in your limbs, and your EMG of your limbs showed “no reason for concern”, then you’re clear of ALS.

The first sign of bulbar is slurred speech that others notice.
 

nvmets10

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Appreciate the response. The neurologist did seem to think there was some weakness in the legs. But the fact that bulbar signs have come on since then without any other explanation does have me quite concerned.
 

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Again, symptomatic legs with a negative EMG of legs rules out ALS. So any bulbar concerns you may have would not be ALS.
 

affected

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I can help reassure also that a raspy voice is not connected to ALS :)
 

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With a clean EMG, these "bulbar signs" [sic] are likely just manifestations of allergies, changes in humidity, dust or mold in your home, so many things. And whatever is making your voice raspy could also be disrupting your sleep quality without your knowing it, causing twitching, etc.

Consider changing all your filters, a nasal steroid, and a close look at your diet and bedding. But no, you don't need to be here.

Best,
Laurie
 

nvmets10

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Thanks to everyone for the input. Much appreciated. I ended up following through with an ENT appointment, which revealed vocal cord dysfunction on a swallowing exam. Apparently the vocal folds are closing on quiet respiration when they should be wide open. He said the swallow itself is normal, but referred me to a movement disorder specialist for further examination. Needless to say, I'm concerned as I know this can be caused by ALS. Was wondering if anyone had advice about specific questions to ask the specialist?
 

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Ask, after examination what they think and what they feel should be done next.
Do NOT ask - do you think I have ALS?
It's not sounding the least bit like ALS :)
 

nvmets10

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Thanks Tillie. The specialist said that while he thinks it's unlikely to be ALS, we can't rule anything out right now since I'm relatively early in my symptoms. His advice was we'd just have to wait and see if it progresses in a few months. Meanwhile, my voice is becoming increasingly strained, I'm now getting twitching in one cheek, and the inside of the other is now extremely swollen, as if it's caving in from loss of muscle. It's starting to feel like something is very wrong.
 

Bestfriends14

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That "something wrong" is not ALS. I really hope that you do not start an unhealthy fixation on a disease you show zero evidence of having. I'm sorry but I have no idea what causes a cheek to be swollen, yet feel caved in at the same time.

Good luck to you and best of luck on your diagnostic journey.
 

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Sounds like you need to have an ENT check your mouth.
 

nvmets10

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Wanted to follow up with one last question. I ended up getting another EMG with a neuromuscular specialist. He also didn't seem concerned but when I saw the results on his screen, the "Poly" column listed "Few" for every single muscle tested (in an arm and leg) while the other columns said "Normal" besides a couple of fasciculations. After doing some research on this, I'm pretty worried. Does anyone have experience with the significance of polyphasic potentials in every muscle? Thanks again.
 

KarenNWendyn

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You’re the only one here who’s worried which should tell you something. Your EMG doesn’t suggest ALS. You’ve asked our opinions, and we’ve given them to you.
 

Bestfriends14

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You do not have ALS. You should celebrate this, not desperately chase after it. Your lack of symptoms, clean EMGs, and clean clinical exams attest to this . The fact that you are not believing a trained neurologist, who has 15 years of post secondary education, should be more alarming than anything. Perhaps you should address that and leave ALS behind you. Good luck to you.
 

nvmets10

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Appreciate all the responses. I will do my very best to move past this. But after all I've now read and watched, I just won't ever be able to get over the cruelty of this disease and lack of treatment available. I'll be donating to both this board and the ALS Association. Just never been so infuriated by something.
 
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