not being able to breathe and swallow was devastating to me for the obvious reasons, but the thing that felt the worst emotionally was not being able to smile. I felt really sad to lose it. Also, I found that when I'd be talking to people (even people I knew well who knew what was wrong with me) they would automatically mimic what they read my emotional state to be, and would become very solemn or concerned when they saw my face. Sometimes I wanted to say, just act normal and laugh! I wanted to laugh too but I couldn't. With people you know well, it might help to remind them that you can't smile as well, so that they know you're not upset. I joked with a friend that I should make a mask, a printed or drawn smile that I attach to a stick and hold up in front of my face when I want to smile. Now I can smile much better, but I'm still self-conscious about my smile looking weird even when it probably doesn't.

you will probably get your smile back as you recover more. but until then, I understand, it sucks, and you can always come here to vent. and good luck on your surgery next week!

Having your face droop is really hard on the ego.

When I met new people I wouldn't look at them & I always covered my mouth when talking. I was embarrassed by the way I looked.

I still remember the day about 6 months after my thymectomy something made me smile. i thought my lips aren't drooping & I ran to the bathroom mirror to see. I ran around showing everyone I could smile.

Your smile will return too. You always have us here to vent.

Debbie

Hi there,

I'm 24 and was diagnosed 2 and a half years ago with this disease. I went through the lovely mestinon, prednisone, imuran, and thymectomy. For me ...the worst part was losing my smile. I went on and on about it in older chats I believe on here. Its tough, because your face is what the world sees all the time.

After about everything it took about a year and a half to get to a point where my face worked again. Now I am off the prednisone and I live a relatively normal life with minimal weakness. Sometimes I still have minor trouble with my speech and eyes but would say I'm doing very well. The recovery process of this disease is veryyy slow. As long as I recharge my batteries I'm good now! I know its definitely hard when you lead a super social life and then this happens and you want to stay out of pictures and wish it wasn't happening to you.

Feel free to message me if you need to vent! Hope your surgery goes well and your on the road to recovery.

vieve,

Yes i agree that not being able to smile is the one that hurt most emotionally. Especially if youre talking to people who dont know youre sick lol. They mistake you like youre upset or make fun of you, and the best solution is to tell them straight up "hey im sick i have trouble smiling and talking sometimes, im not really upset thought you should know"

Thank you! Im glad to hear that your smile is better now. The mask sounds like a good idea haha! i should also make one with an open smile signifying a laugh so if i want to laugh id just switch masks lol.

Debbie,

yes it really is! Sometimes i would refrain myself from laughing because it was really hard. I would just settle for a small chuckle and a closed lipped smile as it was easier.

Thank you it's great that your smile returned! now you dont have to cover your mouth when talking.

ShanAlis,

i agree. And its also one of the easiest ways to convey that youre happy and not being able to do it can really suck.

Oh wow congratulations on dropping the prednisone!! Thank you! I know its a loooong road after my thymectomy but i cant wait for the day that i can finally smile again without worrying how i look. As for now i think ill settle with smiling with my eyes or as Tyra Banks would call it: smize

Wow this sounds just like me I feel you 100%!! I'm on 60 mg mestinon 3 times a day and 60 mgs of prednisone a day! it has been working so great for me but I've noticed a lot of physical changes in my face as well my smile is just not the same and I've noticed how puffy my face is getting :( I can't stand it! I'm having my thymectomy done the beginning of June. Please let me know how it all works out for you. Best of luck !!

I worked with a woman who had a "crooked smile." I thought it was quite appealing --too much symmetry is boring.

Good Luck with the thymectomy--hope it gets your back to normal.

abrookez11,

its sucks :( but at least everything else is doing great for us! I will let you know how my thymectomy goes :) really nervous about it but i just wanna get it over with

Rhanson,

thank you your comment made me feel better :D i hope so too!

Best of luck with the thymectomy. You are in exactly the right age group, young women, who seem to have better luck in general, with a thymectomy, so that's a plus.
Your doctors are not dawdling around either, I think that is hopeful for you as well.
Keep the meds up, as your doctors prescribe, hopefully you can taper down in the future.
I've not had a thymectomy myself, but our friends here tell us, a comfy pillow to hug, can help with any coughing after surgery.y
To prevent sneezing, hold your index finger directly under your nose, like a mustache, and press strongly. Don't know why this works, but it does.
Take care and keep us posted, with prayers for you as well.

I was watching Dr Oz and found out I had a new syndrome called resting bitch face syndrome. So I shared it with my friends. They laughed. Then i told them how my face muscles waxes and wanes. I just have to laugh between the MG & MCTD& sererve restrictive lung disease. Now I have resting bitch face. Their are days I can smile and then I have days when I try that my eyes start to flutter because I'm trying to hard. This was ment to make you and all who read this smile if only in their mind. Have a great day! :)

Hi guys well I was just diagnosed with MG April 1st. I'm devastated. I have good days and bad days. The meds are very hard on me and the thought of Mg symptoms coming back one day or whenever just makes me feel so angry. Mine started off with dropping of the left eye then trouble chewing. I am on 20 mg of prednisone and 10 mg every other day. I just wish it would go away. I just don know what to expect. I haven't had a cup of hot tea or an alcoholic beverage because I'm scarred it will interfere with the meds! Any feedback I'm so new to this.

I agree
If I could have surgery I would get a permanent smile put on my face.

Hi August1s!

It can be really hard, especially if the diagnosis is sudden. I remember my life turning upside down the moment i was diagnosed. I guess the only thing we can do now is be strong for ourselves and have a great support group.

Also, alcohol can exacerbate your symptoms so i suggest avoiding it for a while.