Hi, Alice. Welcome.

Can you say which myasthenic syndrome you have? Is it the congenital myasthenic syndromes you are referring to? I found out in 2006 that I've had myasthenia my entire life (due to photos, symptoms, misdiagnosed lazy eye, etc.). Anyway, I do have MG antibodies but due to a very long story of a doctoring mess, there isn't anyone to test to see if I have CMS too. There are only two places in the US that can do the specific testing for CMS.

There isn't as much they can do for the myasthenic syndromes.

Have you considered getting a pulmonologist? I have a very good one who helps me when needed and monitors me on a yearly basis. They're the ones who take care of the breathing issues if someone has a crisis anyway, not the neurologists.

I do think it may make some people uncomfortable to have a doctor here but you are a patient too! So if there's anything you need, just ask. I hope you are still able to practice medicine.

Can we improve the management of MG worldwide? Not until the diagnostic process of MG can be improved. And the mistreatment of patients, mainly women, by saying they are only depressed, anxious, have chronic fatigue or other labels to insinuate they are being hypochondriacs. Sorry but that's my honest and learned opinion.

Annie