texastracy
Senior member
- Joined
- Jul 27, 2013
- Messages
- 500
- Reason
- PALS
- Diagnosis
- 09/2013
- Country
- US
- State
- TX
- City
- Acuff
Went to clinic Friday, 3/20. It was packed with newly diagnosed patients. Good news and bad news.
- I haven't lost any weight since the last visit and getting my PEG tube, in fact gained 2 pounds! I'm blending foods not on formula.my digestive system can't handle the formula.
- haven't had significant lose of muscle strength in legs, but yes in arms which I knew.
- worst was my FVC was at 40%, down from 73%. But my breathing numbers always yo yo up and down big time. I don't have any shortness of breat and can lay flat without struggling. I only use bipap at night. They offered to do it again, but I said no.
So overall not bad. Yes the number surprised me, but in the bigger picture I have lots of life left.
Tracy
- I haven't lost any weight since the last visit and getting my PEG tube, in fact gained 2 pounds! I'm blending foods not on formula.my digestive system can't handle the formula.
- haven't had significant lose of muscle strength in legs, but yes in arms which I knew.
- worst was my FVC was at 40%, down from 73%. But my breathing numbers always yo yo up and down big time. I don't have any shortness of breat and can lay flat without struggling. I only use bipap at night. They offered to do it again, but I said no.
So overall not bad. Yes the number surprised me, but in the bigger picture I have lots of life left.
Tracy