Gabelle,
Why are you having IV IG every 4 weeks? When I read that yesterday, I was just so curious I knew I'd have to post today and find out........Are you also on steroids? How has the Cellcept worked for you? My neuro told me that some of his patients don't take steroids but have IV IG every 3 weeks or so - is that what is going on with you? I hate needles so much that for me it simply wasn't an option, but I do love the way I feel after my IVIG treatments - I call them "liquid gold" cuz' I feel like I can climb the ighest mountain and swim the deepest sea
........Plasmaphoresis was AWFUL! It was the most invasive thing I've ever gone through ( I preferred my bone marrow test to it)....I hope to never have that again, but will do whatever it takes t o try and stay healthy
......My fellas need me around to take care of them, and quite frankly I love taking care of them! I stayed home from work today to try and get some rest (I've been working 6 days a week recently), so hopefully I'll take a good nap and feel ready for karaoke tonight
.........How is your mom?
When you get some time, please let me know how you are!
Take care!
Erin
Quote:
Originally Posted by GaBelle1
Thanks for keeping my mom in your prayers. I know she'll appreciate it, and I most certainly do! 
I'm on mestinon every 4 hours (120mg.), Cellcept, and IVIG every 4 weeks - in fact this Saturday. Since last month, I've had a home health nurse, and I love getting IVIG at home! So much more comfortable here at home!
I stay pretty busy so have to make sure that I make myself rest. I've definitlely gotten better at it over the last couple of years.
I've had to be on prednisone off and on but never for long periods. I wear contacts (very near-sighted.) My eyes are tired in the evenings, and then I deal with some blurry vision but that's about it. My eyelids droop more and more...that first week after IVIG, I look like I've an eyelift! It's wonderful!  |