kman543210
Member
- Joined
- Jun 17, 2007
- Messages
- 14
- Reason
- PALS
- Country
- US
- State
- Oregon
- City
- Portland
I know this has been covered a lot in the forum, but I have a few questions for those who have been having breathing difficulties due to MND. I have not been diagnosed with ALS and most likely do not have it, but I do have motor nerve involvement, confirmed by 6 EMGs and 3 neurologists (DO, ALS Specialist, and Mayo Clinic neuro). I have a lot of weakness in legs and arms, difficulty swallowing, and a lot of difficulty regulating my breathing even as I type this. I'm not getting a lot of help from my doctors and am trying to figure out if my breathing difficulties are being caused by weakened diaphragm or something else.
My FVC was 73% both in May and September, but when I was hospitalized this past weekend due to breathing difficulties, it was 58% using a bedside machine. Has anyone seen such a drastic drop in FVC, or do you think that the test was done incorrectly. The other test they did was with this hand-held device where I breathed everything out, then sucked on the tube. It's supposed to see if my diaphragm can inhale air, but they did that 4 different time periods during my stay, and they all showed normal. I've never done that test before and am not sure how accurate it is with MNDs.
The other specific questions that I have are concerning how the weakened diaphragm manifests as breathing problems. Do most of you who have a low FVC feel like it's difficult to inhale, exhale, or both? Do you end up breathing faster or just deeper? Is there pain involved in your diaphragm or abdomen from weakened muscles?
Sorry for all the questions, but I am really struggling to regulate my breathing, but no one can give me answers as to why (no, it is not anxiety).
My FVC was 73% both in May and September, but when I was hospitalized this past weekend due to breathing difficulties, it was 58% using a bedside machine. Has anyone seen such a drastic drop in FVC, or do you think that the test was done incorrectly. The other test they did was with this hand-held device where I breathed everything out, then sucked on the tube. It's supposed to see if my diaphragm can inhale air, but they did that 4 different time periods during my stay, and they all showed normal. I've never done that test before and am not sure how accurate it is with MNDs.
The other specific questions that I have are concerning how the weakened diaphragm manifests as breathing problems. Do most of you who have a low FVC feel like it's difficult to inhale, exhale, or both? Do you end up breathing faster or just deeper? Is there pain involved in your diaphragm or abdomen from weakened muscles?
Sorry for all the questions, but I am really struggling to regulate my breathing, but no one can give me answers as to why (no, it is not anxiety).