NeuroTalk Support Groups - View Single Post - Can you work full-time with MG?

erinhermes · 06-07-2009, 04:46 PM

Hi Shar! Welcome to neurotalk! Whoever thought to make this site was BRILLIANT! I was like you, struggling to find a site where people "understood" what was going on daily and stumbled across this site - it has been a life saver! You ae going to meet so many caring, wonderful people who know EXACTLY what you are going through and always willing to lend a sympathetic ear - as well as much needed advice!

I am 35 and was dx'ed right before my 34th bday. Working full time has NOT been an option for me, as my MG is a bit aggressive. From where I sit, it does sound like you are in the same boat. I miss working, but am never going to ignore my body again - EVER!

If you are receiving IV IG every 2 weeks and are still crashing, you may want to ask about plasma exchange. It is more invasive than the IV IG but may provide you with more stamina.

I cannot speak for anyone else, but for ME working fulltime is not an option. I am lucky enough to work with my hubby, so I can get the majority of my work done here @ home on my good days - on my bad days I stay on the sofa........

Can't wait to hear from you!
Erin

Quote:

Originally Posted by SharS

Hi - I'm new and so happy to finally have found this website. Just reading the posts this past weekend has been so encouraging and affirming. Those of you struggling to get diagnosed, please hang in there and know that many of us went through the same struggles, including myself.

I am in my early 50's and was diagnosed with MG in 2005. Currently, I take 60mg Mestinon 3-4xday, plus 180mg sustained release at night, CellCept 2xday and IVIG once every 2 weeks. I have been working full-time since 2003 as the director of development and PR for a children's museum. I have worked hard to keep going with my job but finally crashed the first of April (breathing, walking, no voice, etc). I'm out on short term disability and resting, etc but can't seem to get my strength back.

After 2 months of trying to recover, I can be out for 2 or 3 hours, then I go down again and can barely talk, walk, etc. I can't seem to get any stronger than this. Right now, I am supposed to go back to work part-time mid-July and full-time mid-September.

My question is - am I expecting too much? Can a majority of people with MG work demanding full-time jobs? A minority? It has always been a struggle to keep going with my work even when I was at my strongest with MG, but I wonder if I have not been realistic with my expectations of how life should be managed with MG. I also have a wonderful husband, 4 grown children and 2 grandchildren that need my time and attention, too.

Thanks for any insight you can share about working and managing MG.