Tatia, Questions are never inappropriate, even though some doctors don't like them.

A Tensilon test is normally done in a hospital setting these days. Some people can have adverse reactions to them, especially if they have enough acetylcholine to begin with. Or too much, as is the case in some congenital myasthenic syndromes. They can do an Ice Pack test in addition to the Tensilon Test.

They don't make this "routine" but what they should do is take photos before, during and after any tests like that of your face. Sometimes Mestinon is given after basic breathing tests and then after taking Mestinon, if someone has an obvious pulmonary defect.

A muscle biopsy isn't fun. It does hurt, since they cannot numb the muscle. Seriously, I now sort of understand how wounded soldiers must've felt before morphine or other pain killers. If you do have one, it needs to be done in a center of excellence. Do we have those? I don't know where you live but you really have to plan ahead for a muscle biopsy. The specialized ones are only done in a few places. You have the right to know what is going on with your health. It's not normal, whatever it is.

I agree with Alice, if a simple question would upset this doctor then that does not bode well for the patient-doctor relationship in the future! You've been sick for quite awhile now and need some help. Have you been to a pulmonologist or a neuro-ophthalmologist?

I hope you can get answers.

Annie