NIH, Erdheim-Chester Disease

Got back from NIH, to Columbia to pick up our pooch & fix Mom & my wife a salmon supper, on the 22nd. They were absolutely right. I was completely exhausted. I underwent a heart sonogram & CT scan, a PET scan, Full-Body Bone scan, long bone X-ray, an MRI of my head w/ attention paid to my cerebellum (balance issues can originate there) a spinal X-ray, a pulmonary organ test (A fast paced walk & exhaling/ inhaling w/ a tube in my mouth for measuring volume), a nerve conduction test, consulted Palliative Care and Physical Therapy (for my balance issues), had more than 40 vials of blood taken, had a 24 hr urine study, had a bronchoscopy done, etc., etc.. I'm sure I've forgotten a couple.
It was very taxing. But, it was very interesting, too. The staff was wonderful.
What they found was amazing.I also have ECD in one arm,  the exterior of both lower lungs, the exterior of my right atrium, possibly in my hips (could be bursitis, too), I have Asymptomatic Spina bifida & Diabetes insipidus (my body doesn't use liquids as well as it should) & I pee a bunch in 24 hrs.. W/  the Diabetes insipidus, I don't have enough of the hormone, ADH?, that lets my kidneys know to hydrate my body a little better. This can make me thirsty and fatigued.
I do know a good deal more about myself than I did going in. That's both scary & comforting. But, I'm glad I participated & look forward to returning in a yr or so.