Faux, I wish you and your daughter the best.
Where do you find hope in such a dark situation?
Hang in there, fauxmaven. Sending calm thoughts and healing wishes your way.
Many of us have been thru dark times. We just try to carry on as best we can and that’s the best we can do. Unfortunately, some of us have learned the hard way that medicine is an ART, as well as a science and there are still many mysteries.
Thinking of you and your daughter, @fauxmaven.
((hug))
Now then – your job is to follow her lead, not add anxiety, and keep yourself healthy. Stay positive. Don’t let your worries add to her worries – it’s okay to worry, but try to vent here, or with a counselor. Don’t forget she is more than her illness, and still has interests and all that.
Also, a diagnosis is not the end of this journey. Tests and diagnosis, especially with autoimmune disorders, don’t always provide the illumination you imagine. Doctors understand a great deal about what’s wrong, and sometimes what to do, but rarely why it happened. It may take quite a while (or not) to get a treatment plan that works. It is a two-steps forward, one step back sorta thing.
Today is a good day. She is with good doctors, someone who loves her, and she’s in touch wih you. Breathe, believe, rest when and if you can. (I found nighttime was the worst, you disaster-ize non stop!)
my bonafides: (S2 has a very rare autoimmune disease that took 2 years including 45 days in the hospital to dx. And he’s stable and healthy now)
greenbutton- what was his final diagnosis? maybe I can share it with her doctors. Is he leading a normal life?
I’ll send you a PM, but it’s unlikely his dx is relevant. When I say rare, I mean, really, really, really rare.
Yes, he is leading a reasonably normal life, we are blessed by every breath 
Is there any good reason to assume the Dutch doctors need advice from your family? There are still protocols to step through. Of course, we all hope for the best, for her.
No, but maybe someone will have an idea they haven’t thought of.