First, I am so glad that you were finally given a proper diagnosis.

Second, I am so sorry to hear of what you have been through.

Third, there are many types of congenital myasthenias, and some can be treated very effectively. And they are constantly finding new mutations.

If you have a diagnostic EMG (I still find it hard to believe that no one thought of doing this test before!), then you may want to try and get to Dr. Andrew Engel at Mayo clinic.

I do hope you get a more accurate diagnosis and the proper treatment you deserve (and have deserved for many years).

And keep fighting for your dignity and proper medical treatment.

You are not the only one that has to deal with this.

An excellent psychiatrist (probably similar to the one you saw) said this years ago-

"In the main the diagnosis of ‘hysteria’ applies to a disorder of the doctor–patient relationship. It is evidence of non-communication, of a mutual misunderstanding ... We are, often, unwilling to tell the full truth or to admit to ignorance ... Evasions, even untruths, on the doctor’s side are among the most powerful and frequently used methods he has for bringing about an efflorescence of ‘hysteria’... The diagnosis of ‘hysteria’ is a disguise for ignorance and a fertile source of clinical error. It is, in fact, not only a delusion but also a snare.”

Eliot Slater, ‘Diagnosis of “Hysteria”’, British Medical Journal, 29 May, 1965, p. 1399


alice