Question to bulbar pals

i'm still fighting. started with a limb onset, spread all over my body, but took only my right foot. by now.
maybe my lungs are weaker.
it started in oct. 2018. with bulbar - i lost taste completely, continued to cough. it was not having any problems with breath by then, and my cough progressed, so i cough app. every one minute whole of the day. have nothing to spill, no drolling. just cough. just like something is stuck in my neck. if i speak, i cough more. i had short episodes of cough, but they last app 2 months and disappeared, this time i think wont go, does real problems with breathing start that way?

If you are coughing that frequently, I would wonder if you are aspirating. This means that when you swallow, food and liquids can get into the lungs. See your doctor about this. If you are aspirating, a barium swallow study (you swallow barium and then they take a series of X-rays) can evaluate for this.

If you have lost taste, another possibility is reflux. Reflux means that acid from the stomach can come up the esophagus and sometimes it can be aspirated into the lungs, which can also cause cough. Again, see your doctor.

My partner coughed a lot in the beginning. Probably not as much as you are describing it but it was one of his major complaints. His voice changed too. Before we knew it was ALS he was treated for asthma and reflux. If I remember correctly it got worse in the evenings. Sometimes he had to stop talking. I believe cough syrup might have helped some.

For some reason eventually it got better for a while. Now it is back (the coughing - not sure if it is the same or different) and now it seems to be something like a chemical reaction to food and possible reaction between food and saliva. We will switch from milk protein based protein shakes to other ones. Maybe that will help.

This evening we tried the 'cough assist'. We just got it last week and he has not really used it yet. So I tried it out first. It's strange. Sucked all tiredness out of me. And it took me a while to figure it out. Then he did it and he might have gotten some relief from it.

Hope you find something that will give you a break.

I have bulbar onset but it's presented differently than you describe. I do aspirate on saliva frequently which causes brief coughing outbursts- but to me it's very obvious when coughing is due to aspiration vs coughing due to phlegm or irritated throat. For a while earlier on in my progression I had notably increased post nasal drip which seems to be a "thing." For some reason that improved at some point and I'm not sure why. Or maybe I just got used to it and am not noticing as much. My cough has weakened, but I remain hovering on the line in clinic testing right around 270-280 depending on the day, and they tell me below 270 for cough assist device.

I'm wondering if the 'coughing' is actually laryngospams.

Tillie, That was my thought,too.

However, every symptom we get isn't necessarily ALS. Early on I thought my voice was going but it turned out to be GERD.

Jethro, I would have a doctor check it out. As Karen suggested, a swallow test would tell something and even an exam by an ENT where they can examine your vocal cords might reveal something. I had both of those tests done at one visit.