Robin, Thank you for your reply. Thank you! I am so sad you also have experienced not being heard at an appointment. When my first symptoms started of eye drooping, speech impairment, arm/leg weakness COVID hit right after that. I was not able to get into a doctor, once I was sitting in my car in the emergency room parking lot during COVID, and the hospital told me unless I had covid symptoms, to please not come in........... It was a rough time for sure for many. Then going to the doctors, there was not examination, most doctors did not want to come close to me and I had to wear a mask, which pretty much covered my entire face and the doctors missed my severe eye droop for two years. Then one day, masks off and doctor's were like "when did your eye start drooping". It has been a long, hard journey, which at times has made me rethink trust in the medical society many times. I so want to be an advocate for people, it is unfair and not right.

Yes Mary be ur own advocate! Take someone with you who a take notes as u speak with the dr. I a on y 2nd neurologist. He took e off all infusions. Said he only uses them as a last resort. So far I am holding y own on 90 mg pyridostgmine 3 x day & 20 g prednisone 1 x day. Hoping to get that reduced to 10 or15 soon. I really do not think many drs know very much about MG! It is a very complicated disease with many side effects! Not counting the ones from the meds themselves! Ugh! Keeping a log of symptoms can also benefit and maybe document what u believe brought the on. Lack ofsleep, not enough water, taking meds on empty stomach, spicey foods not enough rest ect. I have found that helpful to kinda self diag myself at times. Keep plugging in there! Sometimes dr want to just try all different meds. I don’t go for that! Or a lot of extra testing either!
Pyridostigmine is the most go to med I believe and a it of prednisone but not a lot. Trial & error unfortunately at times is the only way to success!
Pray u get there soon!🙏

Always take someone with you. It does make a difference.

Robin, thank you for this great advice! I really like the way you put that. Hopefully I will have a good connection with this next appointment in April, but if not, I will try using the wording you have just wrote. Thank you.

My dear dear MG friends! Thank you to all of you for your kind, informative, and so very caring responses to my question. You are all the best!!💞💞