Grace,

Thanks for giving such clear details.

I think it gives a lot of hope to people, and also justifies my personal efforts to increase the awareness and early diagnosis of this illness.

MG is a treatable disease, and quite likely most people can do very well, if diagnosed and managed properly, and it is quite concerning that so many aren't. (even if it is just a small percent of the patients, world-wide those are significant numbers).

It seems like you have had excellent physicians, who sent the right tests, and treated you properly, from the very early days of your illness.

I know it is hard to deal with this illness, side effects of meds etc. But, in that sense you were very fortunate and I am sure it will have a significant effect on your long term prognosis and chance for full recovery.

The first episode of my illness, was 20 years ago. Long before the discovery of MuSK. I was clinically diagnosed with MG, by an excellent neurology resident. I then had a rapid/transient worsening of my illness. After a fairly traumatic hospitalization I was told (by two leading experts) that I have 'nothing" and should learn to live with the relatively mild symptoms I had.
(which I did).

15 years later, I was admitted to the ICU, with a myasthenic crisis. Diagnosed clinically by a neurologist (not an MG expert), and the head of ICU. After a 3 week hospitalization and multiple plasmapheresis, I was referred to an MG expert who couldn't make his mind if I "really" had a myasthenic crisis/myasthenia or not.

Only 5 years later, when I required intermittent respiratory support, and assistance in most of the activities of daily living was my illness finally diagnosed using very sophisticated tests, including direct measurement of my respiratory muscles and an experimental test for MuSK antibodies. (because the usual test was normal in my case).

Your story is how this illness should be managed. Mine is how it should not.

Alice