Balance Issues

I, at last, have an appt. w/ the ENT to investigate the balance problems I've been having. The appt. is in Feb.. The issues have continued to worsen. I've fallen several times this week, & I'm getting sick of it. I've heard the test for inner ear problems isn't very pleasant, though! I'm up for it & ready to take it on. Mess'n' wit da wrong dude, it is. ;-)

Fentanyl, ups & downs

Well, it's official. I figured, for my own safety, I should talk to my oncologist about increasing my Fentanyl back up to 25 mcg's. I just can't deal w/ the light-headedness & poor balance anymore, and my legs have begun to ache 16 to 24 hrs before it's time to change the present patch. DRAT!! I hate feeling like I'm giving in.

Neurologist

SOME NERVE!!

Had a visit w/ the neurologist last wk. After viewing my latest images, he said my hydrocephalus has not progressed, and a shunt would cause a shrinkage of my brain away from my skull. That could cause a subdural hematoma. I'm pretty sure I still have work to do. So, I'd prefer to hang around.

Thyroid Ultrasound, Ophthalmologist

Had the privilege of having an ultrasound for my thyroid this p.m.. A scan at the NIH picked up some nodules that equip. here hadn't been able to find. I'll hear about the results from that in a couple of days to a few wks.
My ophthalmologist gave me a great report and said the backs of my eyes have actually improved. I like good news. :-) 

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.

NIH, Erdheim-Chester Disease

I spent another hour or so on the phone w/ the NIH yesterday being given directions, instructions, short cuts, etc.. This must be a very big facility. I can hardly wait to get there, experience it and meet all these great people. We leave 4 Columbia tomorrow, & fly out Sunday. Keep us in ur prayers.