It is a tricky balance.

And it's not like I have all the answers.

But, I think that (by now) I have asked all (or at least most of) the questions and at least tried to answer them. (based on what I myself experienced, what I heard from other patients about their experiences and what I have read in the medical literature or from discussions with neurologists and scientists studying or treating this illness)

I will try and explain what I meant in "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."

Let's say that you are able to go up three steps without significant difficulty.
But, going up five steps exceeds your limits and makes you crash for an hour.
Let's say that if you stop what you are doing on time you can recover your energy by resting for 10 minutes.

Now in a given hour you can either go up 5 steps and than crash and recover. Or you can go up three steps, rest for 10 minutes, go up another three steps, rest for 10 minutes etc.

The math is easy if you choose the first option you will go up 5 steps, and if you choose the second option you will be able to go up 9 steps during the same time. (I didn't take the time it takes to go up the steps for simplicity).

But, more than that. If you choose the first option you are going to go from being able to do a lot (relatively) to crashing. If you choose the second option you will have a stable level of function and much more control over what is happening.

Going up only five steps (instead of running up a full flight of steps, or even a few flights as you easily did before) is a concession, but that doesn't matter because it still exceeds your limitations.

Now, let's say that for a while you accept the first option and just go up no more than three steps at a time. After a while you feel that your illness is much more stable and much more under control.

Now let's say that you also received treatment that led to significant improvement and made it possible for you to now go up 10 steps with the same effort as 3 steps before.

This understandably makes you feel great. And you start thinking after a while that if things are so much better, why can't you go up 12 steps? (this is still much less than what you did before, but you are ready to settle for that).

At first it seems like you are able to do that, but after a while you crash (possibly less than before and possibly requiring a shorter recovery period).
It is very tempting to keep on going up 12 steps and not only 10. (mostly that it makes you want to go up more).
But, going up 12 steps you don't feel like you did going up 10, so you start thinking that maybe the medication you received is not working as it did before. Because, why would you be crashing again? It doesn't seem reasonable that a few more steps could make this difference.

If on the other hand you realize that the improvement you have means that you can go up 10 steps (as opposed to 3 which is great) but not more than that, you will be able to go up more and have less crashing. (just like has happened when you went 3 steps instead of 5 before).

The margins of your ability have changed but not the nature of your illness.
This is hard to comprehend because in most conditions when there is improvement it gradually gets better the more you do.

Intuitively it makes sense that if you went from 3 to 10, you can soon go from 10 to 12. But, this reasoning doesn't work in MG. It is not forgiving when you exceed your limits even slightly.

Furthermore, my impression (which may be wrong) is that you can do that for a while, but if you keep on pushing your limits, your illness becomes more severe. So, the price of going up 12 steps instead of 10 is a less stable disease short term and being able to go up only 7 steps long term.

My neurologist rule of thumb (and he is the only neurologist I have met who said this so clearly) is always do a little less than you can.

It's interesting that this is also the advise given to marathon runners. Trained marathon runners will never exceed 70% of their maximal ability.

So, the answer to your question of "what's the point of saving my energy if I never get to spend it? " is that you do get to spend it, by being able to do tomorrow what you did today. "what's the point of being able to do more, if I am not doing more?" is that you are doing more, just not as much more as you would possibly want.

This can sometimes be very frustrating. (and makes you want to receive treatment which will enable you to do more and not constantly think about your limits), but it is the reality of this illness we have to learn to live with.

There are times in which it is easier to accept and times in which it is harder, and even times in which you decide that you are going to do more and be ready to pay the price.

I think it is very reasonable to peruse any treatment which is reasonable. (and as I have said I have done so myself for quite a few years). with the hope that you will be one of those who do achieve complete remission (or near it).

But it is also important to recognize the limits of such treatments for your specific illness. And also important not to try and push it to do more than it can. I also know that it is almost inevitable to err on that every now and then.