Reply To: Exacerbation – scared

June 6, 2012 at 1:57 am

Thanks so much yall.. Hummmm. I may have to bring that up to my dr.. it’s hard since I don’t know what an “acceptable” level of dysfunction is.. when to push for more improvement or when to just say being this dysfunctional is “ok”… I hate bugging them, but I would love to be as close to normal functioning as possible! I can’t get over how much this last dose helped.. Thank goodness, I have been a complete mental wreck the past two weeks, my symptoms got so bad – the swallowing thing is freaky,and I couldn’t even hold a crayon well again/my dexterity was getting awful again – can’t hold a mascara wand etc… I feel like I am teatering on the edge of pretty bad dysfunction a lot.. changing the ivig to every 2 weeks is helping, but the getting sick a lot is setting me back big time. THANK GOODNESS now I can swallow and write almost normally again.. I may go ahead and mention loading doses to the dr.. of course i have NO IDEA how I would have time for that… stressed!