I'm confused

[TGB1]

I need some guidance. My mom was diagnosed at the ALS clinic at UPMC in Pgh. by Dr. Lacomis. She is 86 and has bulbar als. When we were there in February (2 mos. ago) I remember the dr. attempting to do a FVC on my mom but she seemed to be unable to wrap her lips around the tube in order for him to get a reading. He then mentioned a pulmonologist but said that a bipap would probably not work out for her because of her being bulbar, but he gave me a scrip for a suction machine. I have the suction machine - which she uses infrequently, but at least I have it. Since I have been on this forum, I now think I want to have a bipap and cough assist available to her if/when needed. Breathing doesn't seem to be a huge issue right now but she does get very tired. Anyway, my sis-in-law contacted the dr. ofc to ask about these two items, and the secretary said they do not have a pulmonologist at the clinic! Is this possible? Wouldn't an als clinic always have a pulmonologist? She then gave her the names of a few pulmonologists, and said that my mom would either have to have a sleep study done or have an FVD of less than 50 percent. Does this sound right? I would think that a diagnosis of als would get you all of the equipment you need w/o having to jump thru hoops to get it.

 

[momap53]

These values or a sleep study are usually what is required for insurance to pay for the items.
The MIP score can also be used
Is she able to sleep "flat" in the bed? Does she need to use several pillows to elevate?
Does she have morning or frequent headaches? Does talking make her winded?

 

[TGB1]

She definitely sleeps propped up with a bunch of pillows. But the funny thing is - she has been doing this for years, literally years and we never thought anything of it, just thought she was more comfortable that way. She does not get headaches, and talking is an ordeal for her because she is bulbar and we can't understand her.

 

[Sunnyflmom]

My mom got a Trilogy a few weeks ago (has not gotten to like using it though). Her pulmonologist thought that a sleep study would be required for medicare to pay or the FVC to be at a specific level but the respiratory therapist had more experience in that area and informed us all that just her Bulbar onset ALS diagnosis would be enough, which it was.