Call your local hospital, ask them, just how well prepared they are for a person with a rare disease such as MG.
Now, if you have already gone there, and had a bad experience, call the hospital, and speak to the person who deals with these things...every hospital has one.
Tell them in detail, and then say you want something done. They will more than likely have a alert for training for your disease.
Tell them, you want a progress report, and if you don't get one with in 6 to 8 weeks, you will call your states department of health, and issue a complaint.
The Board of Health, "HAS" to do a thorough investigation.
Actually so does the Hospital, when you call and complain.
You can complain and still be nice about it. I had to once, when I had an emergency, It took 3 hours to see a doctor. I was brought in by an ambulance. The EMT was so worried, he wouldn't leave me until a doctor came and looked me over, as my breathing was awful.
they didn't even so much as give me a mestinon when i asked for one. Nothing, nada..
Anyways, to make a long story short, I had the Myasthenia Gravis Association send the hospital a packet. The investigation showed that there needed to be severe improvements.
Know your rights!
And again, you can complain with a calm voice, but serious tone. Freaking out, is never taken seriously, even though it is warranted.
This is a problem for so many of us. Not right.
Hope this helps some.
Love Lizzie
P.S. You can have the MGA send a packet to encourage them to learn more too.