Each disease has it's unique burden. Although there are also many similarities.

Patients with MG in general have to learn to cope with the very unpredictable nature of the illness, and with the difficulty of those around them (including physicians) to understand it.

I don't think there are many diseases that raise such confusion both for the patient ,the treating physicians and family members.

It took me a long time to find a team of physicians I feel know enough about my illness, are ready to learn what they don't know, and are ready to talk with each other and overall do their best to help.

Until I found them, I didn't realize how important it is.

I am sure you too will eventually find your team, which will gradually give you the stability and security that you need.