Thanks so much!!!
I can't even imagine IV steriods and a higher dose - IIICK! I was trying to work and felt so awful!!
The dr seems knowledgeable for the most part... but I gotta say i don't feel "comfortable" with them completely.. At first I think they thought I was just an over tired stressed Mom who works and that's why i was "weak" haha.. I wished that was the cause!!! Once I crashed almost a year ago now their opinion seemed to quickly change and they initiated IVIG..THANK GOODNESS!!
I still feel like the fact that I appear normal enough, that they aren't too concerned.. I debate in my head at times- should I push for more treatment to try to be more normal - get as close as I could get to feeling 32 years old, or just settle and be happy that I am SOO much better than I was and just stick with the IVIG.. I fear other treatments making me worse- getting septic or something with immunosuppresants etc.. I do wish I could find a Dr that I felt truely comfortable with and could really talk with and they could understand, however I think since they aren't walking in my shoes they will never fully understand...

My dr had just wanted to use the burst steriods to see if it could be a breakthrough treatment when I had a flare.. It has at least dramatically helped my nasty cough! So that part is good! Now IVIG on thursday.. My speech gets slurred and swallowing about 10 days after IVIG.. it gradually worsens until about the 2nd day after IVIG, then I'm pretty darn good again. My poor veins are getting tender from doing this for almost a year though!