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Sammantha

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Country
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Newport
Okay this face thing is going faster than i expected...... I like the fact that my face is slimmer but i can barely whistle and when i do i look stupid. When i smile my mouth drops on one side and the other side twitches like crazy.... My upper lip started twitching and i look like a rabbit! When i smile for a picture my face/mouth shake so much i look like a crack addict! I can take the twitches when other people dont notice them but when my face becomes funky i cant handle that, i am still 29 so i guess that sounds vain... Is there any advice about this or for this out there?
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Sorry no one answered you Sammantha but possibly there is just no good answer for your question.
AL.
 

handinhand

Senior member
Joined
Mar 28, 2009
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902
Diagnosis
02/2009
Country
US
State
Colorado
City
Pagosa Springs
Okay this face thing is going faster than i expected...... I like the fact that my face is slimmer but i can barely whistle and when i do i look stupid. When i smile my mouth drops on one side and the other side twitches like crazy.... My upper lip started twitching and i look like a rabbit! When i smile for a picture my face/mouth shake so much i look like a crack addict! I can take the twitches when other people dont notice them but when my face becomes funky i cant handle that, i am still 29 so i guess that sounds vain... Is there any advice about this or for this out there?

Hi Sam, so sorry to hear about what is going on with you...sigh!... I am 60 and I think I look like Houdy Doody... I look so funny when I smile.. I am getting two lines that go down the sides of my mouth. One side of my mouth droups. My chin is twitching and somtimes under my eys.... I wonder about a face lift? lol Truly I am sorry you are soo young and going through this. Big Hugs, Linda
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
I agree with handinhand, it is so sad that you are so young...I am 57 and hate how my face is looking, my bottom lip seems to be going in and the skin on my neck is far more saggy now..my skin over my whole body is now so dry as well. Anyone have this problem....I get hair hurt, from sitting in bed or chair and slipping down and hair going the wrong way, makes my hair very sore.
Any advice, sorry I dont have any. we could all do with a beauty treatment I guess
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Can a guy jump in here? I'm getting the crease at the side of my mouth too. It makes a leak in my Bipap mask unless I hold my mouth a certain way. I'm having the dry skin issues as well. My hands look waxy and wrinkled. I just put moisturiser on everything. Actually my home care does it. I'll be 60 next month. Maybe it's age related.

AL.
 

Ronelle

Active member
Joined
Mar 8, 2009
Messages
33
Reason
PALS
Diagnosis
07/2008
Country
SA
State
Free State
City
Welkom
I read a piece somewhere on the internet(sorry can't remember where) that the dry, thin skin of PALS is due to the fact that some of the cells in skin correspond to the cells of muscles and that, as the cells in the muscles die, so does the cells in the skin. It said that researchers are going to use this finding to see if it brings them somewhere closer to more knowledge on ALS.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Linda, I actually asked my ENT about some surgical way to pull up my droopy mouth, and he said it couldn't be done.

Sam ... the change in your expression could very well be due to Myasthenia Gravis. Losing your natural facial expressions is a characteristic of MG. When you get that thymoma removed, you will probably get your real face back ... and your ability to smile naturally ! Keep the faith !
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Sam,
I can sure relate for I look and feel the same way as you do. I am with Beth sure could be related to the MG, and if that is the case may yours go away with surgery and treatment.
 
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