You need to call your neuro and say what happened. They [b]might want to see you!
Anacrusis, Just don't kid yourself into thinking MG has some kind of predictable algorithm. It still surprises me.
A couple weeks ago my daughter ( after big stress) had a very bad breathing time,did not want to tell me, and call 911.They took her to the hospital,I even not sure she could explain what was wrong with her,probably she could ( we did for her a list like ID bracelet with info).The Dr ( they now called " hospitalist") ordered Solumedrol,she did have a few breathing treatments. After that they discharged her, advised to contact her Neuro.
Two days later at night (thank God, she was with me),she started non-stop coughing,breathing treatments did not help.I knew she is getting worse,and tell her that I call 911. She said: I was there already....they did not help( ???!!).I did not listen....While ambulance approaching she said: I can't breath.....When they came, I just gave them our list,so they can do all this paper work ( I could not talk clearly.....).I was just repeating: you might not heard about it ,but this is MG,MG,MG,neurological condition.....One paramedic told me: "I know...".I ask : Do you have C-pap?- Yes,we do in the car.- Please,bring it now!!- Wait until we get to the car- Please,now! - Wait.........
In the car I was asking the same.One paramedic said to other: put C-pap, so mom shot up ( !). It helped .
In the hospital,they continue with this for about 1 or 2 hrs ( I din't know the time).her weakness became better,and breathing too. And of course,they were ready to discharge her,just said to continue Prednison Dr in first ER ordered,breathing treatment,and CALL THE DOCTOR TO MAKE APPOINTMENT.
For the next four (!)days I spoke with his nurse,she said she can not get in touch with him.Then she said to make appointment. They wanted scheduled her for January (!) So,THEY DID NOT WANT TO SEE US RIGHT AWAY.Long story short ( sorry,not too short...),she got appointment in two days.He left her on Prednison for a month.He refused to order IVIG. He NEVER heard about Mytelase .He let me know that all doctors do same thing for MG ,he did not want to do anything that they did not talk about on their conferences..( I did not asked him to...).
Well,she is better now,but she is the one who doesn't know " when to stop",she is young,and kind of "in denial".Now,I hope,she realised how bad and how quickly this could be.But...." When is When?"....
Sorry,it was very long,just wanted to vent.....
Big Thank You to all of you,who are here to share,to advice,to vent,to inform ,or just to read and " feel for".
Happy Holidays,my friends!