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


advertisement
Reply
 
Thread Tools Display Modes
Old 05-14-2009, 12:25 PM #1
xmas 25 xmas 25 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 92
15 yr Member
xmas 25 xmas 25 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 92
15 yr Member
Help Help!!

i've tapered up to 60 mg tid over 4 weeks. today i took 8am and 11:30 am with food as always but------. i can feel and see my muscles all over twitching even in throat neck,arms and my abdomen.is this just a reaction to medicine or something else. i'm afraid because i'm home alone.my phone is next to me in case i need to call 911. i'm not usually nervous but it has me spooked!!!!!!! what is it? help needed from the experts.i will probably call wonderful dr in the next 1/2 hr if it doesnt lesses thanks
xmas 25 is offline   Reply With QuoteReply With Quote
Old 05-14-2009, 02:08 PM #2
maryec's Avatar
maryec maryec is offline
Member
 
Join Date: Apr 2009
Location: Florida
Posts: 291
15 yr Member
maryec maryec is offline
Member
maryec's Avatar
 
Join Date: Apr 2009
Location: Florida
Posts: 291
15 yr Member
Default

When I first started my mestinon, I got the rippling muscle sensation, the muscles twitch repeatedly on there own, I had it in my back, rib cage area, arms & legs, around my mouth. The doctor told me it was the mestinon, & it happens sometimes with the weakened muscles & your body getting used to the dosage. If you, start having trouble swallowing, & breathing, or extreme weakness, call 911, don't wait !
maryec is offline   Reply With QuoteReply With Quote
Old 05-14-2009, 03:34 PM #3
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Default

I myself would call the Dr. Not having taken medication for years now I can say I really do not remember the twitching. If you are scared or have trouble breathing go to ER otherwise call the Dr. Please update us and let us know. {One thing I do remember when I was on 60 pred if I missed a dose I knew it}
Joanmarie63 is offline   Reply With QuoteReply With Quote
Old 05-14-2009, 05:06 PM #4
xmas 25 xmas 25 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 92
15 yr Member
xmas 25 xmas 25 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 92
15 yr Member
Default

Quote:
Originally Posted by Joanmarie63 View Post
I myself would call the Dr. Not having taken medication for years now I can say I really do not remember the twitching. If you are scared or have trouble breathing go to ER otherwise call the Dr. Please update us and let us know. {One thing I do remember when I was on 60 pred if I missed a dose I knew it}
thanks it is the mestinon i'm taking to start.i was able to fall asleep and woke up 95% better!! talked to nurse who confirmed the muscle rippling,twitching is side effect. i have added 4 th dose some days with good results thanks
xmas 25 is offline   Reply With QuoteReply With Quote
Old 05-14-2009, 05:33 PM #5
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
Default

Hey Xmas,
Do you notice more sweating or salivating as well as the twitching. These are symptoms of possibly taking too much Mestinon. Definetly call the doc and see what they think.

Too much can be as bad as not enough, and increase the weakness as well. I have had twitching alone that didn't worry me too much, and I've had the overdose symptoms.

It's a tight rope sometimes, but you'll get familiar with how much you need as you gain experience. Let us know how you're doing and what the doc says, ok?
__________________
Becky
ras1256 is offline   Reply With QuoteReply With Quote
Old 05-14-2009, 11:32 PM #6
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
Thumbs up Hi Xmas!

HEy there! I, too, "twitch" due to the Mestinon - not fun! I take 5 - 60 mgs a day and the BIG boy @ night - 180 in addition to 30 mgs of pred right now.

My suggestion is to always have the phone by you and someone you can call in case you EVER have problems breathing - have a code or something like punching in a number in case you can't speak...........

Once the med situation is figured out you will feel so much better!

Hang in there!
Erin
__________________
Erin
.
erinhermes is offline   Reply With QuoteReply With Quote
Old 05-15-2009, 10:05 PM #7
cricket001's Avatar
cricket001 cricket001 is offline
Member
 
Join Date: Dec 2008
Location: US
Posts: 101
15 yr Member
cricket001 cricket001 is offline
Member
cricket001's Avatar
 
Join Date: Dec 2008
Location: US
Posts: 101
15 yr Member
Default

OMG....SWEATING.....I am sweating like crazy!! I am so sick of wet armpits and reapplying deodorant! I have tried all the "expensive" over the counter stuff.."clinical strength" or so it says on the box....

Stephanie


Quote:
Originally Posted by ras1256 View Post
Hey Xmas,
Do you notice more sweating or salivating as well as the twitching. These are symptoms of possibly taking too much Mestinon. Definetly call the doc and see what they think.

Too much can be as bad as not enough, and increase the weakness as well. I have had twitching alone that didn't worry me too much, and I've had the overdose symptoms.

It's a tight rope sometimes, but you'll get familiar with how much you need as you gain experience. Let us know how you're doing and what the doc says, ok?
__________________
Cricket
.

cricket001 is offline   Reply With QuoteReply With Quote
Old 05-16-2009, 12:17 AM #8
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
Default Hello Cricket!

HEy hon! I too have also noticed that I sweat more, though I do not know if it is due to the pred or the mestinon - my neuro seems to think that it is the roids........as for the deodorant - nothing seems to work for me recently.......clinical strength - my butt! LOL

How are you feeling? Are you stonger today?

Big hugs!
ERin




Quote:
Originally Posted by cricket001 View Post
OMG....SWEATING.....I am sweating like crazy!! I am so sick of wet armpits and reapplying deodorant! I have tried all the "expensive" over the counter stuff.."clinical strength" or so it says on the box....

Stephanie
__________________
Erin
.
erinhermes is offline   Reply With QuoteReply With Quote
Old 05-18-2009, 11:29 AM #9
leaningin's Avatar
leaningin leaningin is offline
Junior Member
 
Join Date: Mar 2008
Location: Reno, NV
Posts: 40
15 yr Member
leaningin leaningin is offline
Junior Member
leaningin's Avatar
 
Join Date: Mar 2008
Location: Reno, NV
Posts: 40
15 yr Member
Default Mestinon Side Efects

Does anyone else have a problem with explosive diaherrea on Mestinon. It just tear up my gut and I'm afraid to go anywhere when I'm on it. Any advice?


Quote:
Originally Posted by maryec View Post
When I first started my mestinon, I got the rippling muscle sensation, the muscles twitch repeatedly on there own, I had it in my back, rib cage area, arms & legs, around my mouth. The doctor told me it was the mestinon, & it happens sometimes with the weakened muscles & your body getting used to the dosage. If you, start having trouble swallowing, & breathing, or extreme weakness, call 911, don't wait !
leaningin is offline   Reply With QuoteReply With Quote
Old 05-18-2009, 12:32 PM #10
Pat 110 Pat 110 is offline
Member
 
Join Date: May 2009
Posts: 586
15 yr Member
Pat 110 Pat 110 is offline
Member
 
Join Date: May 2009
Posts: 586
15 yr Member
Default

Quote:
Originally Posted by leaningin View Post
Does anyone else have a problem with explosive diaherrea on Mestinon. It just tear up my gut and I'm afraid to go anywhere when I'm on it. Any advice?
That is just one of the side effects I would get when I had to take it all the time. I understand completly what you mean about being afraid to go anywhere. For me, it was on the third day of taking it that I would get it that bad. Fortunatly, I can go days without having to take any, so it dosen't get to that point anymore. My neuro prescribed a med to help with that side effect, and I'm sorry, but I forget what it was called. I'm sure many here would know. If you call your Dr. he/she may prescribe something for you. Also, as your body adjusts to the mestinon, you may find it letting up some. It may help too, if you always take it with food or after a meal. Sorry I couldn't be of more help.
Pat
Pat 110 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



All times are GMT -5. The time now is 01:12 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.