Sudden Bulbar Symptoms?

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panicbutton42

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First off, I want to thank anyone that takes the time to respond to this. I know that many here have to put an immense amount of effort to respond to posts and I sincerely appreciate any time put in to respond to my (admittedly anxious) inquiry.

Quick history, I started having right sided weakness and pain (both arm and leg) about four months ago. The weakness was undoubtedly exacerbated with exertion but tended to wax and wane. So far, despite remitting, after an "episode" I never feel as normal as I did prior.

My neuro ran the gamut of non invasive tests, blood panels, MRIs, CT scan, eventually suspecting that I had Lambert Eaton Myasthenic Syndrome after a suspicious antibody test. However after a repeat test from Mayo Clinic came back negative, she ruled out LEMS and scheduled me for an EMG to investigate further. It's scheduled for the 25th.

In recent weeks, I've started to notice a chronic hoarseness to my voice along with a constant "lump" in the throat. I've also started having issues with nasal regurgitation.

While I know that it would be considered atypical for weakness to come and go with ALS, and then for symptoms to sporadically "jump" from my right limbs to my bulbar region, I've also found clinical reports about incredibly odd manifestations. My neuro hasn't given me much to work with, just that the EMG will provide some information.

Can anyone tell me if bizzaro presentations like this exist in the common knowledge?

I'm 31 and there's obviously something wonky going on. I'm just racking my brain trying to get any reliable information.

Again, massive thanks to anyone who takes the time to respond to this, I sincerely appreciate any info that Im able to glean from this incredible community.
 

affected

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Easy answer for you - no bizzaro presentations like that don't happen with ALS but sure do with other things.

Try reading the link I've put in this post carefully and just look after yourself, the 25th is just around the corner and will give lots of information. The EMG is a test, not for ALS, but is used to find a huge range of neurological issues.

Trying to get conversations going here before your EMG isn't really helpful, but once you post your results we can be far more constructive in opinions. All the best :)
 

panicbutton42

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Thanks so much for your response, I'll be sure to go over the Sticky again.

To be honest, your response alone makes me feel loads better already. The EMG is like the "big scary test" in my mind so I really appreciate your insight.

Will report back after the 25th! Take care!
 

panicbutton42

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Hey there affected,

I just wanted to follow up regarding my EMG. I had the test yesterday and all came back clean. They only checked my right sided hand, arm, leg, and foot but I assume if there were issues of any kind SOMETHING would have come up. So I'm going to do my best to move on from these ALS concerns.

Thank you so much for taking the time to respond to me, I really appreciate your advice and input. This community is so incredibly kind to take time to address the fears of healthy people, I truly cannot thank you enough.
 

Nikki J

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You were tested in a symptomatic area so you are right something would have shown.

thank you for letting us know

good luck
 
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