Old 10-16-2018, 04:50 PM #1 (permalink)
Cherise77's Avatar
New Member
 
Join Date: 2018
City: Vancouver
State: BC
Country: CA
Diagnosed: 07/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
Cherise77 is on a distinguished road
Cherise77 Cherise77 is offline
New Member
Cherise77's Avatar
Join Date: 2018
City: Vancouver
State: BC
Country: CA
Diagnosed: 07/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 36
Cherise77 is on a distinguished road
Default Anyone have stomach twitching and shortness of breath?

My Dad recently has been having an increase in twitching in his stomach as well as feeling like he canít breath out fully.
Itís only been happening the last two days and last week he was at the ALS clinic for his 3 month check up and they said he had no progression. Although they didnít do a Vital Capacity breathing test because last week he was feeling okay.
Has anyone experienced stomach twitching with breathing out being an issue?
Thank you for any insight you might have.
Cherise77 is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to Cherise77 For This Useful Post:
beauty4everyone (11-07-2018), jjbell (10-27-2018)
Old 10-16-2018, 05:21 PM #2 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,750
GregK has disabled reputation
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,750
GregK has disabled reputation
Default Re: Anyone have stomach twitching and shortness of breath?

Don't skip a pulmonary function test, pft, because you are 'feeling well', ever.
The loss can be gradual as the body compensates, but when it gets too much.... You don't want that to come as a surprise.
GregK is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to GregK For This Useful Post:
Cherise77 (10-21-2018), dldugan (10-16-2018)
Old 10-16-2018, 11:01 PM #3 (permalink)
swalker's Avatar
Senior Member
 
Join Date: 2014
City: Vail
State: Colorado
Country: US
Diagnosed: 07/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 971
swalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to behold
swalker swalker is offline
Senior Member
swalker's Avatar
Join Date: 2014
City: Vail
State: Colorado
Country: US
Diagnosed: 07/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 971
swalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to behold
Default Re: Anyone have stomach twitching and shortness of breath?

Yes, I have had twitching in my abdomen as well as some of my chest area. And, yes, I have breathing issues with a Forced Vital Capacity (FVC) of about 20%.

I agree with Greg. Don't skip a spirometry of PFT. Those tests quantify things we might not be aware of. I was stunned when my first PFT showed a FVC of about 60%. I thought my breathing was much better than normal when I had that test. Boy, was I wrong!

Steve
swalker is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to swalker For This Useful Post:
Cherise77 (10-21-2018), dldugan (10-17-2018)
Old 10-17-2018, 10:36 AM #4 (permalink)
Kristina1's Avatar
Member
 
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 483
Kristina1 is just really niceKristina1 is just really niceKristina1 is just really niceKristina1 is just really nice
Kristina1 Kristina1 is offline
Member
Kristina1's Avatar
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 483
Kristina1 is just really niceKristina1 is just really niceKristina1 is just really niceKristina1 is just really nice
Default Re: Anyone have stomach twitching and shortness of breath?

I agree with the others- it's ridiculous that they skipped the PFT! My pulmonologist told me on my very first clinic visit that often PALS are totally asymptomatic when their numbers initially go down-- as in they feel fine and didn't notice. My lying down FVC has recently go down, first to 64 then three mos later to 48. I ws taken aback because I had no idea it would have dropped that much. I have occasional mild shortness of breath but I never thought it was that low.
Kristina1 is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to Kristina1 For This Useful Post:
Cherise77 (10-21-2018), dldugan (10-22-2018)
Old 10-27-2018, 03:02 AM #5 (permalink)
jjbell's Avatar
New Member
 
Join Date: 2018
City: Newton Aycliffe
State: England
Country: UK
Diagnosed: 07/2018
Interest: I am a caregiver for someone with ALS/MND.
Posts: 25
jjbell is on a distinguished road
jjbell jjbell is offline
New Member
jjbell's Avatar
Join Date: 2018
City: Newton Aycliffe
State: England
Country: UK
Diagnosed: 07/2018
Interest: I am a caregiver for someone with ALS/MND.
Posts: 25
jjbell is on a distinguished road
Default Re: Anyone have stomach twitching and shortness of breath?

Hello
Jim has constant twiching in the tomach nd pain. Esp.when he moves about. He was diagnosed in July too. His breathing is getting worse. Can't swallow very well either. He has been hallucinating in his sleep nd yet aware of me telling him to go back to sleep😉 Any one experience that? After only 3 months?
jjbell is offline   Reply With QuoteReply With Quote
Old 10-27-2018, 03:21 AM #6 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,440
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,440
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Anyone have stomach twitching and shortness of breath?

J, you said your husband has declined a vent, but is he willing to accept a BiPAP? Sounds like he could use one, if only for comfort like easier breathing. Hallucinations can also be related to the ratio of O2/CO2 that weakness in breathing muscles changes.

If he is declining a feeding tube, the best approach to difficult swallowing (and you will see lots of posts on this using the Search link up top) is essentially thick liquids/gels such as pudding, nut butters in smoothies, applesauce, eggs, even-consistency soups, etc. avoiding thin liquids [there is a lot of variability in which ones are troublesome], kernels, bits, stringy and tough foods.

Best,
Laurie

Last edited by lgelb : 10-27-2018 at 03:31 AM
lgelb is offline   Reply With QuoteReply With Quote
The Following 3 Users Say Thank You to lgelb For This Useful Post:
Cherise77 (10-28-2018), dldugan (10-27-2018), jjbell (10-28-2018)
Reply

Tags
als, breathing, clinic, dad, increase, progression, shortness of breath, test, twitching


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
Shortness of Breath codyclan General Discussion About ALS/MND 11 04-19-2016 09:16 PM
Shortness of breath Mike in Maine General Discussion About PLS 53 07-31-2014 05:38 PM
Shortness of breath CGAR People With ALS - "PALS" 30 02-15-2012 09:03 AM
Shortness of breath icecreamlady General Discussion About PLS 2 10-06-2009 07:52 PM
Shortness of breath that comes and goes trying to stay positive General Discussion About ALS/MND 8 04-01-2008 02:27 PM


All times are GMT -5. The time now is 06:16 AM.

 

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