Hey Connie, Thank you again for the PM. I am so happy you were able to post...you are really missed around here. That is so good you have someone there to help you. I hope she is there at night as well. I am glad you are going to see another neuro. Maybe this will be the one that will help you. I too will be chanting MG! You are so brave and have been through so much, but I know it's going to get better...it just has to. I am so sorry you are going through such a difficult time, but hang in there kiddo. You are always in my thoughts & prayers. Oh, I quit smoking almost 2 weeks ago, so I'm not being so sweet these days. LOL Take good care of yourself and keep us posted when you feel up to it.

Big Hugs,
Pat

Connie
So sorry to hear about your dad. Sounds like we are going through atrophy together. I am getting three days of IV pred. finally ! Home Care is coming to my house, to do it. The atrophy is so scary once it starts, I have it all over my body, even my tongue now.
Keep in touch connie, I will be thinking of you!
Mary

Connie,
As always, you are in my prayers. I, like Erin, believe in miracles and am believing for you for yours!!! Keep the faith and we will all be chanting MG with you my friend! As you have the strength, let us know how you are doing. Remember, we are here for you and the prayers on my end will never cease for you!
Hugs to you,
Simon

Thanks so much for the message! I've missed you too! I've been doing a bit bad...Lotsa visits to the Emerg., but today, I am feeling very strong! The humidity went down...I went for a long walk and was able to move my tongue around! Yaye! lol

I'm sorry about your hand! I have a bit of atrophy in my left hand as well, between my pinky and ring finger...Makes my hand cramp-up, spasm and go limp when I've been typing too much...I also get weird sensations, pins-and-needles...It sucks, I know! I still don't know why I have it, but it's a pain-in-the-butt...

I'm sorry to hear about your dad's illness...I hope that his therapy goes well and he gets better very soon!

I hope it's MG too, girl! I know just how you feel! I was in your shoes, and it's hard when you have to wait and see...I remember staring in the mirror looking for ptosis...Being like, "come on eyelids! Comply! Go weak!" It's really bizarre to anyone who doesn't know the fear of what you view as the only other alternative; the 'if-it's-not-that-it's-this'...But don't worry, like your name on that site, you're hopeful, and i am hopeful too!

By the way, ask your doc. if it's okay to try soda water for the cramps, as it contains quinine...Also, magnesium is also very good for the cramps...You have to use both with caution if it's MG causing it, though...

Talk to you soon, Connie
Nicky

wow. thanks for the replies!! am so glad to hear from all of you. so sorry everyone. I spent the last 1.5 hrs typing out my reply, only to have it wiped out after i had clicked submit. omg.. Its driving me crazy. Lol. Am typing using Dasher now, so i really cant imagine typing it all over again. Its tough typin with Dasher, feel like giving up and using just my right hand to type, but then it maybe better if i start learning how to make my life easier. Lol. Here's a really summarized version.

Thanks for all your wishes and chants! I don't know what I'd do without all of you. I'm not scared of staying home alone, just drives me crazy when there's no one to talk to. Guess I'm feelin more lonely than scared. The lady who's helpin me cant really understand english, so I cant really talk to her. Originally had my best friend check on me as he lives very near, but he's now away for 2 weeks, so hope I survive. Lol.. Am planning on visiting my parents in mid-sept, so am really hoping my condition doesn't deteriorate. there's so much i want to say to each of you. I'll continue tmr... and start typing whatever I've typed earlier. Lol...

Hey Connie,

That's a shame your post went poof, but it's just good to hear from you. Sorry you are having such a hard time typing now, it must be very frustrating. Sure hope your friend gets back soon so you have someone to talk to. Hope you have a very nice visit with your parents and your Dad is doing well. I'm feeling pretty good. Would like to have more energy, but wouldn't we all. LOL Take care and hope to hear from you again soon.

Big Hugs,
Pat

Hey sweetie! I hate it when that happens to me (disappearing messages). After it does, I just give up for a while.

MG is such a lonely disease, but WE are here for you!

No one wants this stupid disease but at least we have found each other and can understand b/c the general public sure can't!

I still think it would be a great idea to have a get together for all of the mg'ers! Now if we all only had the $$$$ to get together.......

How are you today? Are you OK?

Love,
Erin