rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
Anyone know much about these scores on pulmo function testing?
My fvc scores actually went up. They decrease about 20% when laying down. But still, all in all not much change. Compared with a year ago, they were better sitting up, about the same, supine.
However, my MEP was at 20% of expected, and MIP about 40%. The doctor said that he feels like the scale used to rate scores is a bit unrealistic, and therefore the 20% isn't as bad as it sounds, but that I'm still quite low.
I think this must explain why this past winter, when (not to be gross, sorry) my nose ran from the cold weather, it was hard to effectively blow it, or sniff it!
We talked about my voice, I asked him if my decrease in volume could partly be due to this, or if it was just the paralysis, and he felt it could come into play, also might contribute to why my cough is not good. He said with bulbar weakness, it affects a lot that they can't really see or measure in any meaningful way.
So, the RT is supposed to consult with him and maybe tweak my bipap settings again, possibly another sleep clinic is in the future, and I'm supposed to really truly use my cough assist machine. He said at a minimum once a day (minimum! I've been so bad with this!)
My fvc scores actually went up. They decrease about 20% when laying down. But still, all in all not much change. Compared with a year ago, they were better sitting up, about the same, supine.
However, my MEP was at 20% of expected, and MIP about 40%. The doctor said that he feels like the scale used to rate scores is a bit unrealistic, and therefore the 20% isn't as bad as it sounds, but that I'm still quite low.
I think this must explain why this past winter, when (not to be gross, sorry) my nose ran from the cold weather, it was hard to effectively blow it, or sniff it!
We talked about my voice, I asked him if my decrease in volume could partly be due to this, or if it was just the paralysis, and he felt it could come into play, also might contribute to why my cough is not good. He said with bulbar weakness, it affects a lot that they can't really see or measure in any meaningful way.
So, the RT is supposed to consult with him and maybe tweak my bipap settings again, possibly another sleep clinic is in the future, and I'm supposed to really truly use my cough assist machine. He said at a minimum once a day (minimum! I've been so bad with this!)
