Sorry to hear your daughter is back in the hospital again. 
What kind of answers are you getting about what is going on with her? Do you feel comfortable with the care she is getting? If she is feeling so poorly, is someone (husband or other) advocating for her needs and care?
She is at a good hospital, and her husband is a good advocate. May be going in a week or so.
Happy 2017. My daughter had her wedding on DEC 28, and everything went well. She even danced a bit! Best of all son in CA came for 24 hours, although his Parole Officer gave him 5 days. Today Daughter has a consult with National Institute of Health. Still no diagnosis.
Congratulations, @fauxmaven. I hope your daughter gets an answer (and a good treatment plan and prognosis) very soon.
@fauxmaven I am absolutely not in any way trying to diagnose your D, but I was recently diagnosed with something called “central pain sensitization.” Basically, my body misinterprets pain signals. It amplifies “real” pain and hallucinates “fake” pain. It seems to be a poorly understood, under-diagnosed condition.
I still have the lupus, etc but it helps explains why none of the pain medicine was working for me. The treatments that they normally use to try and relieve pain have not been particularly helpful for me but they do seem to work for others.
Best of luck.
fauxmaven, is your D back here in the US? Glad to hear she is improving a bit. How did she get coverage from her BF’s plan if they weren’t yet married?
I didn’t know the NIH did “consults.” I was always under the impression that they just did research/advocacy/etc.
They married June 1 and she got coverage a few weeks after. She bought TRAVEL insurance cheaply in the Netherlands to cover any problems while she is here.
I don’t know if this is what fauxmaven is referring to, but here is one NIH-sponsored service: https://undiagnosed.hms.harvard.edu/faq/
@rosered55 thanks for that! Learn something new every day.
That is a scary story! I hope you all get to the bottom of it soon. (And that the problem can be fixed/cured/resolved soon).
So sorry you went through all this, but glad you got to have your family together around the holiday! Do let us know how her bill worked out in the end. Hopefully it won’t be too much!
Good luck!
Here’s an article about the Undiagnosed Diseases Program. http://www.nytimes.com/2009/02/22/magazine/22Diseases-t.html
Warm congratulations on the wedding!
One of my friends went to NIH for consults and treatment. Visited her in the hospital there!
To get a consult at the NIH, my daughter is related to someone who is in a high position, who asked if he would look over her records, and he decided to see her.
All the best to you and your daughter, fauxmaven. I hope that NIH is helpful.
Thank you for the fascinating article, @rosered55
@fauxmaven Are you talking the NIH in the US or Sweden or the Netherlands?
NIH in Bethesda, MD. I think there is only 1 NIH in the world!
Most countries have their own version of such. http://www.rivm.nl/en/
So, your daughter is back in the USA then. How did the consult go?