Emergency room- advocating for your MG and communicating with staff

Rather than relying on a letter that can be lost, overlooked, become unreadable, I put my hospital name and MRN on bracelet. I then had chart flagged so any admission contact both pulm NP and neuro are notified.

My worst flare-up (so far) in my four years with MG was two summers ago when my swallowing was so bad that I couldn't eat anything and couldn't swallow my MG meds. I was admitted for failure-to-thrive after losing 15 lbs in a matter of weeks. My neurologist had notified ER in advance to have me admitted for treatment and observation, which lasted 5 days and included my one and only IVIg treatment. About a month earlier, I had learned about the risks involved with supplemental magnesium via IV, so when the ward MD ordered it I refused to take it. I spent the first couple of days educating my nursing staff about MG, which paid off the final three days. The ward MDs and even the on-call Neurologists were, not surprisingly, not well-versed in MG so I had to constantly advocate for myself which, along with my now-helpful nurses, got me through the crisis and got me discharged. Bottom line: learn all you can about MG. I also have clinical anxiety, so the first couple of days I was on the verge of panic attacks but fortunately they pumped me up with Xanax which helped me think clearly enough to self-advocate and recover from the MG crisis. (BTW, the IVIg never helped.)

I had an ER visit shortly after diagnosis triggered by taking prednisone (which is generally the "go to" drug for MG, but does make things worse in the first two weeks for many patients). I was not given any drugs other than saline solution because they were well aware I had MG. After tele-med session with a neurologist, I was hospitalized for three days for IVIG treatments.


My recommendation is to have your neurologist provide a letter with instructions for ER personnel that you can carry with you (or a care giver can give them, if you are not able to speak for yourself).