Abby,

I realize that there is a difference among us.

I have had PLEX, IVIG, steroids and Imuran. All either did nothing, led to transient and even dramatic improvement (followed by a major crash), or made things much worse (Not to mention other unwanted side-effects).

I also tried graded exercise, acupuncture and probably other things I don't remember.

I was not ready to accept my illness and wanted nothing less than full recovery. I was determined to recover and get back to what I was before.
I was told during my first crisis that within a few weeks I will be back to normal and I was expecting this promise to be kept.

I blamed myself for being too determined, then blamed myself for not doing enough and then realized that there is a reality I have to accept.
After 10 months of being nearly bed-ridden and very far from what I wanted to be (following "very effective" treatment), I am grateful for what I have and my perspectives have significantly changed. (not that I ever stopped wanting to fully recover from this illness, but it is not a major issue in my life any more).

That being said, I am trying to understand where you are.

The point I am trying to make is that most MG patients will have significant improvement and better control of their illness with the currently used treatments (or possibly even without, as suggested by some small historical studies), but most will not have full resolution of their symptoms and will require some adjustment in their life-style.

Yes, I am sure we can all understand when you say-"what's the point of being able to do more if I don't do more? I might as well still be unable to do more. What's the point of saving up my energy if I never get to spend it? That was my mindset". I am sure most, if not all of us have experienced that and many of us more than once.

But, the price of that is a less stable disease, more ups and downs and less predictability of what can and can not be done. And also (what I call the MG paradox) being able to do less. As well as possibly worsening of the illness.

Just like a patient with diabetes can't take insulin and keep on eating cakes. I don't think a patient with MG can trust the medications to do it all.

This does not mean that you have to give up your dreams and plans. It just means that you may have to find the way to do them somewhat differently.
It is not an "all or nothing" situation and there are lots of in-between options.