Hello everyone - I need your input. My daughter (a nurse) and I have been serving on a patient advisory board at our local hospital for the last several months. After my last hospitalization in 11/2010 (which had some problems), we were asked to participate to see if we could help make the experience better for all patients. We are also working with the nursing care board to better educate them on how to treat all rare diseases in the ER and in-patient.

We are currently looking at the 10 most "common" rare diseases, one of which is mg. The nursing board is trying to put together a list of bullet points for the nursing staff to look at when a patient presents with mg problems, either through the ER or in-patient. I just looked at the proposed guidelines (first try) for mg and to me, they don't really do the job. Of course, the nurse who drafted them has never treated anyone with mg in any format.

I know I have my thoughts about what an ER should look for when a mg patient shows up in the ER, usually with a crisis brought on by being unable to breathe properly. First of all would be, don't look at the oxygen level and assume everything is okay because the levels look good. Don't assume the patient is just having a panic attack and dismiss them. (Of course I'm having a panic attack, I CAN'T BREATHE!) Second would be, call my neuro if I ask yiou to. Chances are that I have already talked to her/him and they sent me to the ER in the first place. They know how to best treat the problem. I know there are tests that should be performed and the MG Foundation of Ameria has a good checklist.

What are your suggestions? I'd like to get some first hand experiences (besides mine) to present. My next meeting with the nursing staff is Sept 6 so any help you can give will be greatly appreciated.