Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 10-25-2009, 03:13 PM #11
jana's Avatar
jana jana is offline
Member
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
jana jana is offline
Member
jana's Avatar
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
Default

Stephanie, how do you sit or lay down? When I am having difficulty breathing (I am a mostly Bulbar MGer who is also asthmatic), I breathe easier when I lay on my left side -- I also tend to sit angled this way in my recliner when I am in exacerbation. Sometimes, I even lean FORWARD (in a sitting position) to catch my breath. Laying on your back makes it VERY difficult for your lungs to work (in an MG body) -- you are pushing AGAINST gravity.

I tend to have the chest pains when I am in exacerbation -- I've had ekgs and worn a Holter monitor -- all came back "normal". If all else checks out (DO get this checked out completely!!!), you may learn that this is just part of the "MG package" -- especially during an exacerbation or time of stress. You DO sound stressed right now -- WITH good reason.

Take care!!
jana is offline   Reply With QuoteReply With Quote

advertisement
Old 10-25-2009, 03:30 PM #12
cherry33778's Avatar
cherry33778 cherry33778 is offline
Junior Member
 
Join Date: Jun 2009
Location: Tampa Bay Area, FL
Posts: 45
10 yr Member
cherry33778 cherry33778 is offline
Junior Member
cherry33778's Avatar
 
Join Date: Jun 2009
Location: Tampa Bay Area, FL
Posts: 45
10 yr Member
Default

Quote:
Originally Posted by jana View Post
Stephanie, how do you sit or lay down? When I am having difficulty breathing (I am a mostly Bulbar MGer who is also asthmatic), I breathe easier when I lay on my left side -- I also tend to sit angled this way in my recliner when I am in exacerbation. Sometimes, I even lean FORWARD (in a sitting position) to catch my breath. Laying on your back makes it VERY difficult for your lungs to work (in an MG body) -- you are pushing AGAINST gravity.

I tend to have the chest pains when I am in exacerbation -- I've had ekgs and worn a Holter monitor -- all came back "normal". If all else checks out (DO get this checked out completely!!!), you may learn that this is just part of the "MG package" -- especially during an exacerbation or time of stress. You DO sound stressed right now -- WITH good reason.

Take care!!
Hi Jana!

I usually lay on my left side. Sometimes I try sleeping on my stomach, which helps my breathing, but worsens my chest pains. Usually this time of year I even have a hard time wearing a brassiere while lying down, because of the pains.

I have had an ekg, ecg, and an TEE but I do not recall having a holster monitor. With no signs heart problems, not even blood pressure elevation, they didn't want to put me through more testing especially after 2 heart catherizations.

I am not particularly stressed out in my life right now, but for some reason every year around this time my MG does get worse.

Thank you for the suggests though!
cherry33778 is offline   Reply With QuoteReply With Quote
Old 10-25-2009, 04:26 PM #13
jana's Avatar
jana jana is offline
Member
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
jana jana is offline
Member
jana's Avatar
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
Default

You are wearing a BRA?? First rule of MG -- NO BRA -- ever (unless it is 2 sizes too large)!!! It keeps you from breathing easily. Wear vests over shirts OR shirts with pockets over each "boom-boom".

Yes, Fall is hard for me, too -- and my neuro is busiest at this time of year -- more patients in crisis -- NOT sure why.

The Holter monitor is one that you wear overnight -- it has a little pouch that you pin to your clothes.
jana is offline   Reply With QuoteReply With Quote
Old 10-25-2009, 04:43 PM #14
cherry33778's Avatar
cherry33778 cherry33778 is offline
Junior Member
 
Join Date: Jun 2009
Location: Tampa Bay Area, FL
Posts: 45
10 yr Member
cherry33778 cherry33778 is offline
Junior Member
cherry33778's Avatar
 
Join Date: Jun 2009
Location: Tampa Bay Area, FL
Posts: 45
10 yr Member
Default

Quote:
Originally Posted by jana View Post
You are wearing a BRA?? First rule of MG -- NO BRA -- ever (unless it is 2 sizes too large)!!! It keeps you from breathing easily. Wear vests over shirts OR shirts with pockets over each "boom-boom".

Yes, Fall is hard for me, too -- and my neuro is busiest at this time of year -- more patients in crisis -- NOT sure why.

The Holter monitor is one that you wear overnight -- it has a little pouch that you pin to your clothes.
LOL.....Good advice, but just to defy gravity I'll one one in public. Is that okay? I'm only 26, unmarried, and I do plan to be married one day without the "boom booms" to my knees, lol.

Anyways, I have to check out that holster monitor. Thanks for the advice!
cherry33778 is offline   Reply With QuoteReply With Quote
Old 10-25-2009, 05:00 PM #15
jana's Avatar
jana jana is offline
Member
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
jana jana is offline
Member
jana's Avatar
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
Default

hehehehehe -- "boom booms" to your knees!! You are funny!! Yes, a PUBLIC bra sounds good -- LOL!!!
jana is offline   Reply With QuoteReply With Quote
Old 10-25-2009, 08:57 PM #16
redtail's Avatar
redtail redtail is offline
Member
 
Join Date: Jun 2007
Location: western australia
Posts: 894
15 yr Member
redtail redtail is offline
Member
redtail's Avatar
 
Join Date: Jun 2007
Location: western australia
Posts: 894
15 yr Member
Default

Hi Jana and Cherry,

thanks for the laughs, I've been away for a couple of days, its amazing how many people can appear when you are offline for a while sooo welcome from sunny Australia!!!
I hate this time of the year here, comming into summer, cos summer is really bad for me. I am lucky to have airconditioning, cos otherwise I wouldn't function well during the hot days and nights.
Kate
__________________


Outside of a dog, a book is a man's best friend.
Inside of a dog, it's too dark to read.
Groucho Marx
redtail is offline   Reply With QuoteReply With Quote
Old 10-25-2009, 09:42 PM #17
JCPA's Avatar
JCPA JCPA is offline
Junior Member
 
Join Date: Aug 2009
Location: South Ga Girl
Posts: 85
10 yr Member
JCPA JCPA is offline
Junior Member
JCPA's Avatar
 
Join Date: Aug 2009
Location: South Ga Girl
Posts: 85
10 yr Member
Default

Hey girls,


October is Breast Cancer Awareness month!!

Save the boom booms!!!!!! HEEHEE

Jujuan
JCPA is offline   Reply With QuoteReply With Quote
Old 10-25-2009, 09:45 PM #18
jana's Avatar
jana jana is offline
Member
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
jana jana is offline
Member
jana's Avatar
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
Default

Hi Kate!

If I had the money, I'd change continents with the seasons so that I could ALWAYS be in a WARM place -- LOL.

LOVED the movie -- "Australia" -- mainly because of the GORGEOUS scenery.

I'm really NOT usually humorous -- Stephanie just got me tickled -- hehehehehe.

Nice to meet you!
jana is offline   Reply With QuoteReply With Quote
Old 10-25-2009, 10:03 PM #19
erinhermes's Avatar
erinhermes erinhermes is offline
Senior Member
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
Talking You guys are sooooo funny!

I hear ya about the bra thing! After my lung biopsy I used to have to lift them to catch my breath - now that I am fast approaching a double d I have to wear one - granted mine still hang to my knees when off, but for me it feels better to have these suckers hiked up to my neck! LOL!

Loose shirts and bras feel best right now - after my weight loss I'll be back down to a b and then they really will fall.....poor hubby!

Thanks for the laugh!

Erin
__________________
Erin
.
erinhermes is offline   Reply With QuoteReply With Quote
Old 10-25-2009, 10:20 PM #20
redtail's Avatar
redtail redtail is offline
Member
 
Join Date: Jun 2007
Location: western australia
Posts: 894
15 yr Member
redtail redtail is offline
Member
redtail's Avatar
 
Join Date: Jun 2007
Location: western australia
Posts: 894
15 yr Member
Default

Hi Jana,

I havn't seen "Australia", but yes the scenery here is gorgeous, especially up north where it was shot, I havn't been north yet toooooo hot, and not enough money to go holidaying up there. Down south where I live is quite pretty to, you can see some of the scenery in my albums on my profile page.

Yes Erin I to will be back down to an a\b size when I lose weight, but I must say it is nice having a bit bigger bust size, I use to be an A, and finding nice bras here in that size is nearly impossible!!!
__________________


Outside of a dog, a book is a man's best friend.
Inside of a dog, it's too dark to read.
Groucho Marx
redtail is offline   Reply With QuoteReply With Quote
Reply


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


Similar Threads
Thread Thread Starter Forum Replies Last Post
FDA: Botulinum Toxins Linked to Respiratory Failure and Death Sandel Reflex Sympathetic Dystrophy (RSD and CRPS) 0 02-12-2008 08:34 PM


All times are GMT -5. The time now is 04:18 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.