My cardiologist said he treats several MG patients and we're all different, like snowflakes. I think there are probably a lot of MG patients who take their meds, go into remission, and get back to normal activities and we've found each other as we have the more severe cases that are harder to treat.

So there is a good chance that with proper treatment you can go into remission and resume many of your previous activities. That said, you will have to be careful not to overdo your activities and to be aware of your limits. Keeping in mind that I'm a severe case, I've run into issues where I've thought, "I can do 'that'," and whatever 'that' is, put me in bed for three days. I don't want to scare you away from get back to normal life--I'm hopeful that I'll be more normal with my surgery and the new medicine I'm on, just be aware of your limits and don't try and go too far beyond them.

Jeff

Ugh, I hate those lines.
Also the lines some doctors say: MG is an easy disease!

I stopped telling people what kind of disease I have. Because they look it up, see it's treatable, easy to life with and what more.
It's in huge contrast what I have to cope with, sometimes not even being able to stand up from the toilet or make myself a cup of tea, due to weakness.
I hate it, because it makes me feel stupid. I have had other diseases doctors call serious and whatever, but they never messed my life up as MG does! If I say I'd rather have my cancer back, almost no one understands.

However, this is my personal story, it's never possible to say if you can work again or not. I guess most people with MG respond well to treatment, or go into remission, and have normal, happy lifes.
There are also more options if the first medicine won't do enough for you. There's mestinon, loads of immune suppressants, and more to try. So there is a big chance you will feel much better.

However, I do have a question in having a normal life: even if you have almost no weakness, but to come to that, you have to take, say... 6 x 60 mg mestinon, 25 mg prednisone, 250 mg azathioprin, maybe some medicine for the side-effects, ánd you have to take account of what you doing, when you're doing it, rest on time, etc....How can that be a normal life?

I find if I simply say I have a "form of muscular dystrophy" or I'm a "Jerry's kid" it produces a little more sympathy from acquaintances. They think I'm a "future goner" so I get the pity as well as few expectations. LOL People I have deeper relationships with get the whole story.

When I am looking at doing something physical like hiking or going to the beach and I'm feeling good, I rarely think, "Should I do it?" I just go and deal with the fallout later. It's important to me to do things as normally as I can. If I am feeling crappy prior to an activity, I'll likely still go, just modify how I do it.

There has been nothing "normal" about my life. I spontaneously went into a full remission early on with the disease. It lasted 2.5 glorious years. Let me tell you, the relapse was FAR worse than the initial onset as I knew what I was losing. That lasted for 10 years until I did the reboot. Now I say I'm STABLE, but don't use the word "remission" though many of you would probably consider it a remission. Still, there's nothing normal about needing to stick a needle in your chest every 3 weeks for IVIG, or to take all those pills, going to get labs, seeing a neurologist and crashing occasionally.

With all of that...it's still my life. I make from it what I can.

[QUOTE=4-eyes;907664]I find if I simply say I have a "form of muscular dystrophy" or I'm a "Jerry's kid" it produces a little more sympathy from acquaintances. They think I'm a "future goner" so I get the pity as well as few expectations. LOL People I have deeper relationships with get the whole story.


Thanks, I think that is a great idea to say I have form of muscular dystrophy because everyone has heard of that and knows MD is serious. My experience so far with friends and aquaintances is same as others have said, they assume I just take a pill, feel better and my life is back to normal, especially because to outsiders, we look ok. I know they mean well but just makes me feel worse. I look at pictures from just few years ago and to me I look like I have aged 20 years!