Bulbar ALS suspicion - Uncle recently passed

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Nimh

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Hi. First, I hate that I'm coming here and I appreciate any kind of response. My family recently lost my mom's youngest brother to ALS. He one day couldn't tie his shoe. Everyone was convinced he'd had a stroke and that was the beginning.

I am terrified that I have bulbar onset als. About 6-9 months ago, I started making these soft snorts here and there when I was exerting myself. They are audible to other people and I'm pretty sure what I'm hearing is air escaping from my nasal cavity into the back of my mouth. I also started noticing certain sounds being produced sounding a little... Mushy. Nobody else notices this about my speech except sometimes my 7 year old. Well, the last couple days I've had food enter my nasal cavity twice while I was eating, painfully.

When I looked it up, all of theses point to something called velopharyngeal insufficiency. There aren't a ton of causes for it as an adult, but one of them is MND.

My neuro (I have chiari and high intracranial pressure) checked me out and referred me to an ENT, but he wasn't looking for ALS. Does this sound anything like how bulbar starts?
 

KarenNWendyn

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See the ENT. VPI isn’t that unusual. ALS would be an unusual cause. Speech therapy can also help.

No, it does not sound like bulbar ALS. The first sign of bulbar isusually slurred speech that others notice.

Please read this if you have not already done so
 

Nimh

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I did read all the stickies. Thank you. I am hoping for an ENT referral soon. I'm just letting my anxiety get the best of me. Hopefully I can get an answer soon. Best --
 
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