rogerm213, Is your name Roger?

Studies have shown that it's the newly diagnosed or the undiagnosed MG patients who often go into an MG crisis in approximately the first year because no one is willing to give them cold, hard facts about MG. I've been in one and wouldn't want anyone to go through it. Doctors often give that line that "You can live a normal life with MG," and then patients think they ALL can do that.

The other issue is the "plasticity" of MG. It tends not to be. The brain, for example, is very plastic and by that I mean that it is capable of learning and relearning. It's "flexible."

With MG, however, the more you push, the worse you get. The worse you get, the longer it takes to recover. For example, it took a MONTH for me to get out of bed after my crisis (2005) to do anything. Four months after my crisis, I socialized with family who were in town and I had an exacerbation, which is not quite a crisis. I can go do errands now and only need to rest for a much shorter time, like an hour.

And you are not only pushing MG but your immune system too. Once the immune system goes awry, it tends to go southward in other ways as well. Many of us have more than one disease. I have celiac disease, asthma and allergies. Some have thyroid diseases or pernicious anemia. So pampering your immune system, not only your MG, is a very good move (i.e., getting enough sleep).

I'm sorry if you were put off by anything I, or others, have said here. Being realistic about MG does not equate to taking hope away. There's always hope. Our honest discussions here do not preclude hope. On the contrary, they give us the skills to combat this illness the best way we can. And you absolutely need knowledge to do that. MG has a big learning curve.

I hate quoting statistics because I honestly don't believe they're accurate, since they've historically been done on small groups of MGers. The old adage was that 1/3 get better, 1/3 stay the same and 1/3 get worse. I think that's BS. And I think "they" need to take a fresh look at MG and its patients.

I'm sure you must know, being a runner, that you can't sweat out sodium and then intake too much water or you'll be open to having hyponatremia (low sodium). If it happens quickly, like with binge drinking alcohol, you can die. Knowing that does not stop anyone from running but it gives them knowledge to best take care of themselves, right?

MG is more stubborn than my Norwegian ancestors. It'll do what it wants whenever it wants to do it. So when you do decide that you'll do whatever you want whenever you want to do it, just know that your MG "partner" may have other ideas.

You do go through a grieving process when you get any disease. What I have had to give up in my life has just about killed me. And the financial strain is impossible to deal with most days. You really have to fine tune existing coping skills or get new ones to deal with a disease and what it can "take" from you. That does not mean, however, that you can't have a good life. But it'll probably be a new "normal" that is harder for you and your family/friends to adjust to.

We are all here to support everyone in the best way we know how to. We all bring different skills to the discussion and that's what makes it so interesting here. And we RESPECT each other. So, please, feel free to share anything and do say what you just said about feeling a loss of hope. I don't speak for everyone here but let me say from my heart that I welcome what you have to offer.

Human beings haven't even begun to tap the potential for healing within themselves and there is ALWAYS hope.

Annie