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Hello everyone,
We just got home from the NIH about 2 hours ago. This seem to be a less stressful trip than the previous ones. It sure is strange without Janet Jones!! We all miss her.
Miranda did pretty well, a couple of things came up while there. We found out, through Ana, that mirandas papalldema seems to be a little better!! Great news!! Although, her blood pressure seems to be an issue, it is still high. Her CT scan also indicated that the inflammation in her inner ear seems to be worse. So we are not lower the steroids at this point. Not sure if the steroids were lowered too fast, but we are going to keep it at the same dose for another month, have a MRI done to see if it is any different.
By the way, Karen, Ana told me you said Hello, thanks for thinking of us, we return the same with a big HELLO!!! Hope Seth is doing ok, Is he????
Kate, I have been meaning to call you, and I haven't....sorry...How is Alex doing??
We met Diane and Ema while we were there, mother and daughter both have NOMID. Ema, I hope you change your mind!!!
It was really nice talking with them., shared a lot of info. I am sorry I am going to have to go, can't keep my eyes open! Long drive back home.
Will write tomorrow or the next day.
Hope all is well with all of you.
Lots of love to all,
Sherri
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