Karvorka
Active member
- Joined
- Mar 7, 2011
- Messages
- 52
- Reason
- PALS
- Diagnosis
- 04/2008
- Country
- AU
- State
- NSW
- City
- New Lambton
Ok here's my question, I was diagnosed with bulbar onset over 3 years ago and the first specialist my neurologist sent me to see after my diagnosis was secondly and thirdly comfirmed was a respiratory and sleep specialist (I assume because people with bulbar onset have a higher prevalence of respiratory problems earlier on than limb onset).
Anyhow I did an overnight oximetry, a sleep study and a pulmonary function test to get a basis to work off for future tests, initially I would go once a month (which is as often as the respiratory clinic is run at my local hospital) to check for the speed of change; not much was happening so monthly turned into 3 months and than 6 months and so on. My last function test came back at 60% from my initial test at which point my doctor said he wants me to start using a bipap to help improve my quality of life but I feel fine, no headaches, tiredness, napping, fatigue. So I'm just not sure why I should use it to improve my quality of life if I feel fine. I have used it in the afternoons for a few hours to test it out but that's about it, what's the consensus ? Is there an unexplained reason why I should be using it other than to feel better?
Thanks
D.
Anyhow I did an overnight oximetry, a sleep study and a pulmonary function test to get a basis to work off for future tests, initially I would go once a month (which is as often as the respiratory clinic is run at my local hospital) to check for the speed of change; not much was happening so monthly turned into 3 months and than 6 months and so on. My last function test came back at 60% from my initial test at which point my doctor said he wants me to start using a bipap to help improve my quality of life but I feel fine, no headaches, tiredness, napping, fatigue. So I'm just not sure why I should use it to improve my quality of life if I feel fine. I have used it in the afternoons for a few hours to test it out but that's about it, what's the consensus ? Is there an unexplained reason why I should be using it other than to feel better?
Thanks
D.