So i met with my neurologist on weds and am just looking for some advise from people who are in the same boat i am!? lol. I have come to really not like it when people say "you look so good today"!!! and feel like i can't keep it in anymore. So a lil of a overview, started testing in may after severe weakness, fatigue, you name mg system i had it, my eyes being the exception. i had double vision on and off but that was it. went in for testing. was dx with seronegative Mg and was already on prednisone and mestinon...a few weeks ago started getting shortness of breath, chest pain. worsening with exerction, (all the while i work as a medical assistant for 3 drs.) and i am working full time. So needless to stay i ended up in the hopsital last tues in a going into a myasthenia crisis (thankfully not needing any breathing support) but very close to it. So they started me on 5 day ivig treatment! and that did wonders! it was amazing how much i felt better! almost like my 22 yr old self, and then i went to back to work on monday and here is where i need some advice. feeling good monday at work...could tell that i def was better then before (having the ivig) but being off of work and back on it was a totally shock to my body. By tues afternoon at work i was completely exhausted. coould barely walk, just one of those super bad days. slept for 12 hours and got up for work today and am just not back to have i was pre ivig cuz i still am feeling better but i am still getting so tired and so weak that it is really getting not only old but affecting my work consider i was out for 5 days hoping i would come back and be all better (fat chance i know but one can dream) So what do i do now? neuro and i decided that my treatment will def be ivig and pred and mestinon but he said that my next ivig will not be for 3 to 4 more weeks! What am i suppose to do now!? I am in total denial that i need to change my job but am guessing that this is something i am going to have to think about. I just got this job 3 months ago....so bad timing and i love it, neuro said that he thinks i need to cut back to part time, that i am just pushing myself and that is going to keep me in this vicous cycle of not getting better. And to top it off... i really can't afford to work just part time........ughhh i feel like my life has been turned upside down and inside out and is thrown all over the place, and i know that i know ivig works for me i wish i could get it done at a rate that would keep me able to keep my job (not sure how realistic this is).....


anybody have any thoughts? sorry this is so long...