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


advertisement
Reply
 
Thread Tools Display Modes
Old 03-19-2014, 05:43 PM #1
Alberta Ron Alberta Ron is offline
Junior Member
 
Join Date: Jan 2014
Posts: 14
10 yr Member
Alberta Ron Alberta Ron is offline
Junior Member
 
Join Date: Jan 2014
Posts: 14
10 yr Member
Default TTwitches

I was diagnosed with MG last Oct and I am experiancing muscle twitchhes sometimes its my fingers or toes. has anyone experience this?
Alberta Ron is offline   Reply With QuoteReply With Quote

advertisement
Old 03-19-2014, 06:32 PM #2
Alberta Ron Alberta Ron is offline
Junior Member
 
Join Date: Jan 2014
Posts: 14
10 yr Member
Alberta Ron Alberta Ron is offline
Junior Member
 
Join Date: Jan 2014
Posts: 14
10 yr Member
Default Twitches

I didn't mention that I am on 50 MG of Prednizone and 90 MG of mestinon every 4 house for 3 times and 180 sr mesttinon at night
Alberta Ron is offline   Reply With QuoteReply With Quote
Old 03-19-2014, 08:49 PM #3
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

I have a lot of muscle twitches. I am not sure if it is the MG or something else. Mestinon will cause them if your dosage is not exactly what your body wanted at that moment.
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Old 03-20-2014, 09:52 AM #4
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

http://en.wikipedia.org/wiki/Fasciculation

Sorry, when I read about "twitches" or fasciculations, I always think about ALS. (Sadly, I've known some people who had this horrible disorder.)

I don't want to scare you. It MOST likely IS the Mestinon. Check out the link. But, "sometimes" docs get MG and ALS confused. There have been cases where people with MG were misdiagnosed with ALS and visa versa.

HOW were you diagnosed?

Your Mestinon dose seems really high for a newbie. It really is MOST likely the Mestinon, I think.
__________________
~jana
jana is offline   Reply With QuoteReply With Quote
Old 03-20-2014, 11:47 AM #5
Bipedal Primate's Avatar
Bipedal Primate Bipedal Primate is offline
Junior Member
 
Join Date: Feb 2014
Posts: 32
10 yr Member
Bipedal Primate Bipedal Primate is offline
Junior Member
Bipedal Primate's Avatar
 
Join Date: Feb 2014
Posts: 32
10 yr Member
Default

yes!
Mestinon really helps with my double vision but can cause some twitching in my wrists and ankles.

I learned a great tip HERE just a few weeks ago. Mestinon can help some muscles feel better but can over stimulate other musles that don't need any extra acetylcholine.

So, now if my ankles get twitchy I just get up and walk around for 10-20 minutes and problem Solved! :-) Or if my wrists start to twitch I start doing stuff.... like house work, cooking, or laundry...lol.
Bipedal Primate is offline   Reply With QuoteReply With Quote
Old 03-20-2014, 12:00 PM #6
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

Every time I hear the letters "ALS" it gives me the heeby jeebies. I read that it is a rapidly progressive disease and that it causes severe muscle atrophy. I've been having this crap for at least three years and it is not all that much worse. I'm thinking that lets me off.

http://en.wikipedia.org/wiki/Amyotro...eral_sclerosis
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Old 03-20-2014, 01:59 PM #7
Needananswer's Avatar
Needananswer Needananswer is offline
Junior Member
 
Join Date: Oct 2012
Location: NYC area
Posts: 73
10 yr Member
Needananswer Needananswer is offline
Junior Member
Needananswer's Avatar
 
Join Date: Oct 2012
Location: NYC area
Posts: 73
10 yr Member
Default

Mesty def gives me twitches. It helps the muscles that need it but for those that don't they get very twitchy.
Needananswer is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bipedal Primate (03-21-2014), cait24 (03-20-2014), southblues (03-20-2014)
Old 03-20-2014, 04:16 PM #8
cait24's Avatar
cait24 cait24 is offline
Member
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
Member
cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
Default

Quote:
Originally Posted by Needananswer View Post
Mesty def gives me twitches. It helps the muscles that need it but for those that don't they get very twitchy.
That explains why my muscle most severely affected by MG, also are the ones that twitch - thighs and upper arms. Usually before a dose not after

thanks
kathie
cait24 is offline   Reply With QuoteReply With Quote
Old 03-20-2014, 04:56 PM #9
limpy's Avatar
limpy limpy is offline
Member
 
Join Date: May 2012
Posts: 224
10 yr Member
limpy limpy is offline
Member
limpy's Avatar
 
Join Date: May 2012
Posts: 224
10 yr Member
Default

When I first started mestinon, my tongue twitched a lot. I still get occasional twitches, in a variety of muscles, but I really think it does have a lot to do with some muscles not needing the extra acetylcholine at the moment it is made available.
limpy is offline   Reply With QuoteReply With Quote
Old 03-21-2014, 01:24 AM #10
Bipedal Primate's Avatar
Bipedal Primate Bipedal Primate is offline
Junior Member
 
Join Date: Feb 2014
Posts: 32
10 yr Member
Bipedal Primate Bipedal Primate is offline
Junior Member
Bipedal Primate's Avatar
 
Join Date: Feb 2014
Posts: 32
10 yr Member
Default

My left eye is fine but my right eye crosses inward (esotropic starbismus) which causes terrible double vision (diplopia).

Sometimes, if I'm not using my eyes to read, then my left eye will start twitching. If I start "using it" by reading something I notice the twitching stops after about 10-20 minutes!

I'm still trying to figure out my Mestinon 'sweet spot.'

For the past two days, I have been taking 60mg // 3 times a day // 10am, 2pm, 6pm. I have had zero side effects besides the occasional twitching.

The positive side effect I LOVE, thus far, is that I used to have chronic constipation and now I do not :-D {{LoL}} (sorry for TMI)
Bipedal Primate 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 10:56 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.