Old 01-29-2013, 07:50 AM #16 (permalink)
Member
 
Join Date: 2013
City: Birmingham
State: Iowa
Country: US
Diagnosed: 01/2013
Interest: I have been diagnosed with ALS.
Posts: 217
dbltree is on a distinguished road
dbltree dbltree is offline
Member
Join Date: 2013
City: Birmingham
State: Iowa
Country: US
Diagnosed: 01/2013
Interest: I have been diagnosed with ALS.
Posts: 217
dbltree is on a distinguished road
Default Re: Pulmonlogist Appointment Done

Thanks for posting some great information that certainly will help people like me with a lot of questions!
dbltree is offline  
Old 01-29-2013, 08:24 AM #17 (permalink)
hjlindley's Avatar
Senior Member
 
Join Date: 2011
City: Richmond
State: VA
Country: US
Diagnosed: 10/2011
Interest: I have been diagnosed with ALS.
Posts: 764
hjlindley is on a distinguished road
hjlindley hjlindley is offline
Senior Member
hjlindley's Avatar
Join Date: 2011
City: Richmond
State: VA
Country: US
Diagnosed: 10/2011
Interest: I have been diagnosed with ALS.
Posts: 764
hjlindley is on a distinguished road
Default Re: Pulmonlogist Appointment Done

My FVC fell precipitously between clinc visits. Now down to 71%. I feel like I'm in Denver! Bipap makes me crazy...even after 3 adjustments. Guess I know my failure mode.
hjlindley is offline  
Old 01-31-2013, 07:43 PM #18 (permalink)
New Member
 
Join Date: 2012
City: St. Louis
State: Missouri
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 96
bob_s is on a distinguished road
bob_s bob_s is offline
New Member
Join Date: 2012
City: St. Louis
State: Missouri
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 96
bob_s is on a distinguished road
Default Re: Pulmonlogist Appointment Done

I had my first appointment with my pulmonologist today. He took a history, listened to my breathing, and we chatted. My paliative care doc asked for the visit as a baseline because I have no breathing issues yet. I go back in 3 months, and it makes some sense to keep that appt if I am able. But I'm not convinced about seeing the neurologist again in May. Doesn't seem worth the effort.
bob_s is offline  
Old 01-31-2013, 09:48 PM #19 (permalink)
Senior Member
 
Join Date: 2011
City: nixa
State: mo
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 633
pearshoot is on a distinguished road
pearshoot pearshoot is offline
Senior Member
Join Date: 2011
City: nixa
State: mo
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 633
pearshoot is on a distinguished road
Default Re: Pulmonlogist Appointment Done

[stay on top of your fvc. talk to breathing specialist about exersize called stacking air and start doing it regularly to maintain good fvc. improved mine from 86 to 93 in 6 months
pearshoot is offline  
Old 02-03-2013, 06:54 PM #20 (permalink)
New Member
 
Join Date: 2012
City: St. Louis
State: Missouri
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 96
bob_s is on a distinguished road
bob_s bob_s is offline
New Member
Join Date: 2012
City: St. Louis
State: Missouri
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 96
bob_s is on a distinguished road
Default Re: Pulmonlogist Appointment Done

My fvc tested normal in late December. I didn't know about stacking air exercises. Thanks.

Quote:
Originally Posted by pearshoot View Post
[stay on top of your fvc. talk to breathing specialist about exersize called stacking air and start doing it regularly to maintain good fvc. improved mine from 86 to 93 in 6 months
bob_s is offline  
Old 02-04-2013, 10:18 AM #21 (permalink)
Senior Member
 
Join Date: 2011
City: nixa
State: mo
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 633
pearshoot is on a distinguished road
pearshoot pearshoot is offline
Senior Member
Join Date: 2011
City: nixa
State: mo
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 633
pearshoot is on a distinguished road
Default Re: Pulmonlogist Appointment Done

some measurements are fvc and some total volumn. total volumn can exceed 100% which mine did when being diagnosed in feb/2010. fvc gives a truer representation of your breathing
pearshoot is offline  
Old 02-04-2013, 12:46 PM #22 (permalink)
New Member
 
Join Date: 2013
City: Grafton
State: MA
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 31
daigs is on a distinguished road
daigs daigs is offline
New Member
Join Date: 2013
City: Grafton
State: MA
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 31
daigs is on a distinguished road
Default Re: Pulmonlogist Appointment Done

I'm happy for you. Keep thinking positive. Have you looked into the diaphragm pacemakers? I wish you the best.
daigs is offline  
Closed Thread

Tags
diaphragm, food, fvc, love, muscles, night


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
I got an appointment ! wendya432 General Discussion About PLS 10 07-25-2014 11:21 AM
I got an appointment! petlover Do I Have ALS? Is This ALS? 5 01-25-2013 11:37 AM
todays appointment olly General Discussion About PLS 13 01-16-2012 05:16 AM
First appointment with neurologist laurenac81 Current Caregivers (CALS) 10 11-20-2010 08:59 PM
Clinic appointment JOSIEM02 General Discussion About ALS/MND 12 04-04-2010 06:59 PM
my neuro appointment rose People With ALS - "PALS" 42 01-13-2010 12:33 AM
1st ALS clinic appointment sharona General Discussion About ALS/MND 11 10-23-2009 01:38 AM
Appointment boxer22 Do I Have ALS? Is This ALS? 4 06-26-2009 01:28 PM
Neuro Appointment chris_uk Do I Have ALS? Is This ALS? 6 01-13-2009 12:29 AM
appointment billyd Do I Have ALS? Is This ALS? 9 02-20-2008 11:57 PM


All times are GMT -5. The time now is 01:11 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016