Table 2.

Key quotes from digital conversations about MG.

Topic	Quote
Diagnosis difficulties	Do I have MG? … I do have one slightly droopy eyelid, so I did the look-up test, followed by the ice test. Looks to me like a pretty definitive MG outcome, but does anyone else have any insights to share?
	You shouldn’t have a doctor that you need to prove your disease to. You should have someone who is willing to help you and treat you with respect
	So, I will have to gather records and test info to carry with me since it is now clear the University certainly won’t diagnose me with a muscle disorder much less MG or protect and improve my quality of life
Symptoms	Does anyone else tremor with exertion…? My eyelids twitch when I squeeze my eyes closed, I have a rumble in my ears that’s similar, and even my tongue tremors when sticking it out. It’s a nightmare
	…[A] couple of years ago I started having these weird bouts of overwhelming fatigue on top of the usual fatigue, where it was impossible to do anything, or even think
Living with MG	Since April I've noticed some memory and concentration changes…I find my SHORT memory to be terrible and as [for] my concentration…
	Watching your life implode due to a disease is something only someone with that disease can understand…
Treatment	Treatment isn't helping much anymore. Neuro is thinking of IV medicine. Which ones have you taken, and how did you do with them? I'm getting scared
	I receive IVIg infusions every two weeks. I don't know why, but even with these treatments, I have been gradually doing worse over the past month or so…
	I don't feel that prednisone has helped at all
	I have reduced my Mestinon as it causes me severe twitching now. More side effects than benefits

IV intravenous, IVIg intravenous immunoglobulin, MG myasthenia gravis