Erin,
Thank you being so positive! Thinking positive is probably the best thing. How do you do it when things get so bad? I don't want to think about the bad things now, but I do have so many things to figure out. It feels good to have people to relate to. I think I have the right medication figured out at least for now-I feel ok and can see most of the time(although definitely my vision is not perfect).

No anxiety medication for me right now. I think what I need now is a support group-this place is great.

My curiousity wonders what causes MG, no one seems to know. The answer is probably at least somewhat in the common experiences.

I hope you are feeling better.

hi d.f.
my symptoms also presented after having the flu. had ptosis for 2 years off and on, treated/misdiagnosed as other things. after the flu i had difficulty chewing, swallowing, lifting above the shoulder and holding my head up. apparently stressors like illness can unmask symptoms. talking to others here, this is a fairly common thing.
if you're having trouble with the dosage on your mestinon, talk to your neuro about half pills. they do make a 30 mg. but no one seems to stock it. my neuro originally wanted me to start on 30 mg. but i just got 60 mg. and a pill cutter. turns out i need much more, 90mg. every 4 hours, religiously. this dose keeps me almost symptom free.

Welcome Susan.

So many people have mentioned discovering MG after the flu. As I look back, a couple of years ago I did get the flu a lot, wonder if that is when it started?

Hey sweetie! Thanks for your kind words......when I was first dx'ed with MG I was scared and angry all of the time. I decided that while it may rob me of a few things (short term), it will NOT take my FAITH, HOPE or DIGNITY!

As long as we are alive, there is always - always - a chance for remission! I pray for it daily!

I TRULY appreciate life all the more. I really do! I feel so blessed to have made such amazing friends on this site!

You will have good days and bad days, the key is to not bottle up your emotions - rant, scream, cry, do it all! You are entitled to all of those emotions and need to express them!

On my bad days, I sit on the sofa eating frosting, watching old movies - crying my eyes out. Those days are few and far between now though.

I also realize how close I came to not making it and that really put things in perspective for me. Life is just too precious to not enjoy - relish - even!

I will get better! I am hoping to finally get my port or shunt so I can have monthly treatments - they make all of the difference in the world to me!

Hope you feel stronger today!

Love,
Erin

Susan,
Welcome to this board and keep your thoughts coming our way. You will find the most incredible people who are supportive here on this site. I know you have been thru quite enough for a lifetime, but don't give up or give in, because you have too much to live for! I will keep you in my prayers and I know that God will keep His hand on your life! I count it an honor to be able to keep you in my prayers daily. Keep in touch.
God Bless and Big Hugs to you,
Simon

Hi Susan,

welcome!! Great to see you here, as you can see everyone is very friendly and helpful here.

take care
Kate

Welcome here! Susan.

This is a very helpful and supportive bunch of people here!

I am sure you will enjoy it here and find some interesting ideas and comments from others' experiences!

Hi Susan, welcome to this great family! =) Thank you so much for sharing your story, what an ordeal! It must be really scary to have gone through all of that, am so glad you pulled through. Like what Annie says, if you have gone through all that, I do believe MG will not get you down. There are many here who are true fighters like yourself, and we're all here for one another! So feel free to ramble on whenever you need to, or ask anything here.

Ps. I also think perhaps you should keep your location a secret, just in case....

Thanks Motorhead for sharing your similar experience.

I think the pill cutter is a great idea. I am still adjusting my dose. I need somewhere between 1-2 pills daily and am getting the right amount figured out with help from my doctor.

I am glad you are mostly symptom free. I no longer have the worst symptoms, but still get tired at the end of the day and have minor symptoms. But I am not complaining. The first month of MG was scary without the Mestinon-I don't want to experience that again-I hope those days never return.

Thank you for your concern about my safety Annie - and anyone else who's posts I may not have read yet.

The "evil people", as I call them, hired private detectives and know where I live (it took them about 4 years to find me since I was keeping so many things secret) . I have other solutions in place to keep me and my family safe that I won't mention here. No need to hide my place of residence at this time. Don't worry about me.

I have been slow to post because I have been feeling extra tired these past days but feel better today. I can only guess that this is a common occurance for others, too.