Originally Posted by alice md

Dear Kathie,

I did not have a definite diagnosis for more than 3 years. (even though I was hospitalized in the ICU with a "myasthenic crisis" during that period).

Even now (when I have "objective" evidence) for my illness, some neurologists would probably not accept this diagnosis as it is based on tests which are not done routinely.

So, you can see me as an "expert" in living with this type of uncertainty.

As I have said in another post-despite severe disabling symptoms and numerous humiliating experiences, I did not let this illness disable me nor be humiliated by those who treated me with such disrespect.

It was not easy, but except for a relatively short period (of 10 months), I kept on with my work, and continued to trust myself and my coping abilities to overcome this. I had (inevitable) moments of despair, but I never let those last for long or take over my life.

I made it clear to everyone around me that I have stayed the same person, have the same ambitions and goals and will find the way to accomplish at least some of them, even if it requires doing it in a very different way.

I would always tell my patients that we do not choose the circumstances of our lives, but we do choose the way we deal with them. And during hard times, I would remind myself of this advice.

Most MG patients do not have to live with this uncertainty for so many years. Most will have a much easier to diagnose illness and will respond to currently available treatment within a relatively short period.

I hope you belong to that more common group of patients.