Hi Everyone!

So sorry haven't been able to post much, really having problems typing. Its easier to use the mouse tho. Just a quick update, have got a feeling my hand's starting to atrophy, have wrinkles/dents appearing where it used to be meaty. Two of my fingers on my left hand are not really responding now, hard to straighten and cramps when I try to type or use utensils. Its driving me crazy, knowing what it may be, yet I can't do anything about it. In the past week alone, have spilled drinks on myself twice, splattered salt all over the stove when I tried to cook simply cos my hand jerked when I was trying to move it.

Got a shock of my life when I tried to sit on the toilet bowl that day, but my leg wouldn't bend. Am experiencing so many first times now, think my life's pretty exciting.

Mom and Dad's away for Dad's cancer gene therapy treatment overseas, so basically its just me and my dog in my house, together with a helper. Am somehow still hoping that my symptoms are MG, am hoping so badly that ptosis will set in and its MG! Maybe I'm crazy to think this way, but anythings better than whatever that doc said. Lol....

So even if you don't hear from me, do know that I'm thinking of all of you, and I'll do my best to keep myself safe. Am planning on seeing another neuro soon, just to see what he'll say. Before that think i should chant MG MG MG MG MG. Love you guys! Miss all of you too!

Erin: do take care of yourself babe! Am sorry for all the visits to the hospital, please be careful and rest when needed!! A little rest goes a long way!

Annie: I love reading all that you're posting. Lol.. Tho I'm not replying doesn't mean i'm not reading... Keep posting your advice! You're a boffin!!!

Pat: You're really such a sweet person. I will do my best to check in more often, really drives me nuts when there's so much I wanna say, but no energy to type...

Rach: Am really hoping that the French docs will be able to look at you properly and give you the treatment you deserve. Will be praying for you. Its sooo nice to know that they're so prompt in their reply!! Hope things work out!!

Mary: How have you been?? Have they found out whats the cause of the atrophy?? Am so sorry if I havent been keeping up, but you're in my thoughts!

Simon: do hope you're doing fine!! Your words are always a source of comfort!

Beckie: Not sure if you'll see this, but how's everythinggg?? Busy with your schedulee? =)

Nicky: Have things become better? How's your condition nowww? I'm rooting for you!

Joanmarie, Kate, cKitty: How have you all been? Do hope that everything's fine!

Sorry if I've missed anyone out, but I really do miss all of you! Time to let the cramps work themselves out. Lol.. Will try to post mroe tmr@

{{{Connie}}} I am so sorry you are going through this,, so here is my chant MG, MG, MG, MG, MG, MG! You know when I was DXed 18 years ago, I was told there is no pain with MG, so if not than why do we all suffer with pain? I was at my neuro yesterday and it was after 3pm so he got to see how I get in the afternoon and the pain/stiffness in my left leg was so bad I had tears in my eyes and he said "wow, I didn't realise you got like this" So since we all seem to suffer pain I am thinking, YES, it must be MG because to be honest, I don't want to be told it is something more than MG. It seems the Drs like to give us many DXes, wondering if maybe they get a cut from drug companies for every extra DX they give us..LOL

Feel better soon and I hope it all works out for you. I am glad you checked in and how sweet of you to add a personal little message to each individual here.

So lovely to hear from you, and I love the personal messages at the end. Its so thoughtful and caring of you.

Im so sorry that you are bad at the moment. I have had to restrict my time on here as well due to double vision, Ive had ptosis continually since 9th August, probably as Im doing battle with a Kidney infection.

I really hope your dads cancer treatment goes well. How long are you going to be by yourself? Is anyone popping in and checking you are ok?

Make sure you try and take it easy, I know its hard.

Love
Rach x

Hey sweetie! So sorry to hear you are going through all of this crap and that your father is ill.

I WILL be chanting "MG!MG!MG!" for you!

Does the lady that helps you stay the night? Do you have an emergency back up #?

Are you scared being there alone? I used to be all the time. All the time - it DOES get better!

I know it's ez for me to say, but I do believe in miracles and I do believe you are going to get better.

Know that you are ALWAYS in my thoughts and prayers!

Love,
Erin

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