Update, they are ordering bipap for me now! Finally had that visit with pulmonary, supine fvc was 48%, down from 64% in June, so I won't have to argue with insurance after all. Oddly my upright fvc is unchanged and pretty good at 75%
I have now been advised to have a PEG port placed in my stomach since my breathing has taken a turn for the worse. I can still eat and drink, but I was told my FVC was now down to 50% so it's time to do this procedure before my breathing becomes even more compromised. The procedure would be done...
My wife uses the Trilogy about 12 hours a night and then about 2 hours with an afternoon nap. Her last FVC test score was 25. Is there a “normal or expected” progression of needing to spend more time on the Trilogy? I saw on one post that the pals was on the Trilogy 24 hours a day. Can that be...
I had hoped that I would be able to report back with some kind of diagnosis, but unfortunately I still do not have one. Timeline since my last post:
-went to a podiatrist. Has a foot MRI which showed all sorts of things such as tendinopathy, mucoid degeneration, joint effusions, tenosynovitis...
My husband was diagnosed in May 2017, but we can look back and see symptoms that we didn't recognize in August 2016. He had his first ALS Clinic visit in June 2017. At that time his Forced Vital Capacity (FVC) was 3.9 and they said his lungs were great. It dropped to 3.6 in October and 3.3 in...
Hi all,
I'm really, really sorry for posting again - my old thread got locked automatically which can be accessed here - https://www.alsforums.com/forum/do-i-have-als-als/40349-another-bulbar-als-thread.html
My current symptoms all remain or getting worse since this has started 4 months ago...
age
als
arm
back
breathing
bulbar
conversation
denervation
emg
falling
fasciculations
fvc
insertion
medical
mri
muscle
neurologist
peg
saliva
shoulder
swallowing
symptoms
twitching
weakness
work
My dad was diagnosed in May last year. Within 3 months he was in a wheelchair and 3 months after that his speech started to go. He is now in the end stage - no speech, no arms/legs, and unable to swallow. His FVC was 24% in January.
He had been using the trilogy mask at night, but over the last...
I’ve been waking in the mornings more and more with a dull headache. It usually improves as the day goes on. I know that can be a sign of CO2 retention, but I don’t feel short of breath and my most recent FVC was 75%. I do sleep lying flat, and it feels comfortable.
I’ve also considered...
I have great breathing numbers (FVC of 85 sitting up, 75 lying down). I like to sleep on my back with my hands folded on my chest. I use two pillows so I'm not flat. I have no trouble breathing until I rest my hands on my chest. It is as though they've become too heavy and the weight is...
Had pulmiRy test at va today, even though my numbers have gotte n better from a year a go ( fvc 48. Up to61 now and co2 at 34. Up from 31 last yr)
Only wish this meant I felt better,had more Energy, easier breathing.
Oh well. IIWII
Wed tube change