Let's say there are three questions here.
The first, that you have covered, but may be helpful for others, is, "Is it time for a feeding tube?" One
study suggests that an ALSFRS-R bulbar subscore (the three items that cover speech, salivation, and swallowing) of 8 or less out of a max of 12, is a good noninvasive [not requiring swallowing tests] cutoff for scheduling tube placement, for someone who wants to keep on going.
After that, there are two questions: does the tube extend life? It's hard to do a controlled study of that question since we are not going to randomize whether someone gets a tube or not. The short answer is, especially if you have already lost a lot of weight, the data we have better support the tube's quality of life benefits than a survival advantage. Of course, data are limited by how long people wait, variability in how on point the chosen procedure and the people doing it are, and delays even after P/CALS decide, just as you're experiencing.
But the larger question is, apart from any impact of the tube, how much time is there, assuming you use the BiPAP to the extent needed? There is an online FRS-based
calculator highlighting the probability of nine-month survival that may provide some insight, though it is by no means a crystal ball. You can also find studies illuminating some of the key favorable prognostic factors in PubMed, such as limb onset, maintaining BMI, and appropriate respiratory support.
And, as we've discussed before, most clinics are willing to share more personalized prognostic information from their experience, though they are trained to not necessarily to do so the first time you ask for it, so if you want it and have asked once, ask again.
Hope this helps.
--Laurie