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


advertisement
Reply
 
Thread Tools Display Modes
Old 11-10-2011, 11:11 PM #1
Ravenred Ravenred is offline
Junior Member
 
Join Date: Nov 2011
Location: Northern IL
Posts: 31
10 yr Member
Ravenred Ravenred is offline
Junior Member
 
Join Date: Nov 2011
Location: Northern IL
Posts: 31
10 yr Member
Default

Quote:
Originally Posted by pingpongman View Post
One thing I have come across. My nearest hospital is not able to handle a MG crisis. I have to travel 25 miles to get IVIG treatments but the hospital 3 minutes can't give that treatment. I suggest you check now to find out who can handle any problem you might have with MG.
Mike

Good point to consider. BTW - does any one wear a med alert? I use to wear one for med allergies (which after all the reading I've been doing may actually not be allergies! -
Ravenred is offline   Reply With QuoteReply With Quote
Old 11-10-2011, 04:07 PM #2
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default

Great! The fact that you're his first MGer also explains his excitement when you responded to the Tensilon test just like the textbook says you're supposed to do.

I'm glad you got the Mestinon prescription. Here's some things to know. First of all, if it bothers your stomach, take with food. It bothers some people's stomachs, but not others'.

Mestinon has a really short half-life. After about four hours, about half of it has already left your body. So if you find that it works, but only for a few hours, typically the neuro will tell you to take it more often instead of taking higher doses. That makes a lot of sense.

Understand that too much Mestinon can make you weaker. So pay very careful attention to how it affects you. If you keep a journal, you will be surprised at the patterns that show up that you hadn't noticed. Write down when you took the meds, what symptoms you have when, and anything else that seems relevant: how much sleep you got, what activities you did, any emotional upsets, heat or cold. A lot of MGers do better in the cold.

Some people find they need Mestinon at night, if they wake up choking or wake up with double vision (your eyes move in your sleep). If you do, ask for Time-span, a time-release version of Mestinon that saves you from having to get up in the middle of the night to take a pill.

Again, take new symptoms seriously! Any trouble breathing, choking, or sudden or extreme weakness can be a sign that you're headed for a crisis, which is a medical emergency. There are emergency treatments for MG.

Abby
Stellatum is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Ravenred (11-10-2011)
Old 11-10-2011, 11:22 PM #3
Ravenred Ravenred is offline
Junior Member
 
Join Date: Nov 2011
Location: Northern IL
Posts: 31
10 yr Member
Ravenred Ravenred is offline
Junior Member
 
Join Date: Nov 2011
Location: Northern IL
Posts: 31
10 yr Member
Grin

Quote:
Originally Posted by Stellatum View Post
Great! The fact that you're his first MGer also explains his excitement when you responded to the Tensilon test just like the textbook says you're supposed to do.

I'm glad you got the Mestinon prescription. Here's some things to know. First of all, if it bothers your stomach, take with food. It bothers some people's stomachs, but not others'.

Mestinon has a really short half-life. After about four hours, about half of it has already left your body. So if you find that it works, but only for a few hours, typically the neuro will tell you to take it more often instead of taking higher doses. That makes a lot of sense.

Understand that too much Mestinon can make you weaker. So pay very careful attention to how it affects you. If you keep a journal, you will be surprised at the patterns that show up that you hadn't noticed. Write down when you took the meds, what symptoms you have when, and anything else that seems relevant: how much sleep you got, what activities you did, any emotional upsets, heat or cold. A lot of MGers do better in the cold.

Some people find they need Mestinon at night, if they wake up choking or wake up with double vision (your eyes move in your sleep). If you do, ask for Time-span, a time-release version of Mestinon that saves you from having to get up in the middle of the night to take a pill.

Again, take new symptoms seriously! Any trouble breathing, choking, or sudden or extreme weakness can be a sign that you're headed for a crisis, which is a medical emergency. There are emergency treatments for MG.

Abby
Thanks for the advice - neuro warned me about the trots side effect but I've actually been experiencing something more embarrassing (although it does have a hilarious side to it) over the last 12 hours - instead of the trots, grammy here has the toots which happens to have my 5 year old grandson (who lives with me) in hysterical fits of laughter and trying to compete to see who can make the loudest sound! Ah well, I'd rather be giggling, laughing, tickling, and tooting away with him then sitting and wondering why I can move to play with my little guy.... Air freshener is a cheap price to pay to be able to play with him again.....
Ravenred is offline   Reply With QuoteReply With Quote
Old 11-11-2011, 11:48 AM #4
teresakoch's Avatar
teresakoch teresakoch is offline
Member
 
Join Date: May 2010
Location: Fort Worth, Texas
Posts: 199
10 yr Member
teresakoch teresakoch is offline
Member
teresakoch's Avatar
 
Join Date: May 2010
Location: Fort Worth, Texas
Posts: 199
10 yr Member
Default

....instead of the trots, grammy here has the toots which happens to have my 5 year old grandson (who lives with me) in hysterical fits of laughter and trying to compete to see who can make the loudest sound! Ah well, I'd rather be giggling, laughing, tickling, and tooting away with him then sitting and wondering why I can't move to play with my little guy.... Air freshener is a cheap price to pay to be able to play with him again.....

LOL!!!!!
teresakoch is offline   Reply With QuoteReply With Quote
Old 11-12-2011, 01:05 PM #5
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
15 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
15 yr Member
Default

Like you said - - small price to pay. I'm glad you are responding so well to the Mestinon. Nice to have some 'staying power' again, huh?
suev 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
Learn from my mistake knittenkitten Multiple Sclerosis 8 06-14-2009 08:16 PM
Mistake on MRI sheena Multiple Sclerosis 5 08-04-2008 07:11 AM
by mistake!! Cedar Epilepsy 3 01-16-2008 08:40 PM


All times are GMT -5. The time now is 12:06 PM.

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.