Bulbar ALS fear

[Jclay12]

I posted a few weeks ago about excess saliva and trouble swallowing but now I'm really struggling with nasal regurgitation/burning in nose when drinking and now food being left in mouth after swallow. I'm really panicking and cannot eat anything but liquids. I am still a ways out from my ENT appointment. It's miserable. Does anyone have a similar experience. I'm scared it's definitely als.

[glassgirlw]

What ever came of your tests in July that you were having ran for ALS? Did they find anything?

[Jclay12]

I wasn't having bulbar symptoms then but had an EMG on my leg. It was abnormal but didn't point to anything exact at the time so we are going to repeat in a few months. My neurologist knows about this and is keeping in contact with me and pushing me to an ENT for swallow testing.

[glassgirlw]

Ah ok. I haven’t experienced what you’re dealing with so I can’t offer much advice, but I would say if you literally can’t eat any solid foods then it’s worth a call to your doc to see if your specialist appt can be moved up. That’s not a healthy diet for long term for sure.

[Dcf93]

Did you ever figure out what this was. I literally had all the same symptoms and had a modified barium swallow which came back normal. My ENT thinks it’s all psychosomatic and refuses to do anymore tests

[Jclay12]

I had a regular barium swallow through the ER that showed esophageal dysmotility and cricopharyngeal muscle weakness as the muscle won't relax properly to allow food into my esophagus.

The modified barium swallow (with solids) is tomorrow.

[kyllikki]

For what it's worth JClay, esophageal dysmotility is really not uncommon. I've had it on and off for over 15 years, and I am not all that old
I won't be able to find a link to it again fast enough, but during my wormhole research about ALS I also read in a peer reviewed scientific journal paper that ALS literally never presents as "dysphagia first" (swallowing problems), it's always "dysarthria first" (trouble speaking/enunciating)
If people aren't asking you what's wrong with your voice/if you've been drinking, I would ask the ENT to help you understand why your larynx and esophagus aren't moving properly, and make sure they have a full medical history from you -- have you been sick recently (COVID, for example?) Any other coughing? Done any heavy lifting lately, carrying a heavy backpack, or gotten hit in the chest with anything? Do you sing? Been to any concerts or sporting events where you did a lot of yelling?

Literally all these things can mess up the muscles you use for swallowing and talking, because they are really tiny, and in use constantly... and all are way more common/likely than bulbar ALS, especially if you're male and/or under age 60

[Dcf93]

How did your MBSS go?

[Jclay12]

MBSS showed incomplete relaxation of the cricopharyngeus, again. The speech therapist said the muscle is weak and she will come up with a plan for exercises to help that muscle.

[Dcf93]

Did she have any theories as to what could of caused that?

[Jclay12]

It could either be neuromuscular or a severe reflux issue in which reflux came up into my throat and damaged that muscle. However, I had an upper endoscopy last week and it ruled out acid. She is letting neurology know so we can figure out next steps.