Repeat copper test.
Here are some updates for you all.
Thank you so much for continuing to pray!
The past two weeks, I started experiencing sharp pain in the ball of my right foot—it became very painful to bear weight on it. I saw Orthopaedics, and the doctors think I’m dealing with something called metatarsalgia which is pain, swelling, and inflammation of the metatarsal bones/joints in the foot. Thankfully, it’s improving! Ice and rest has helped. The doctors also referred me back to occupational hand therapy because my right hand has been cramping up a lot again, even when I wear my splint that the therapist made for me. I see them next week after physical therapy. My left hip/leg muscles have also “shortened” a ton which is causing severe charlie-horses (muscle spasms) and an inflamed sciatic nerve. So my therapist is working on this.
Using BiPAP at night has been going so well! I’m tolerating it much better than CPAP. I have a follow-up with my sleep dr. next month.
My neurologist called me yesterday with my overnight video EEG results…thankfully, no sign of seizures! I’m glad I don’t have to add another problem to my plate…the jerking I deal with daily is non-epileptic. She said she still saw brain wave “slowing,” but it’s not constant which is a good thing.
On Tuesday, I saw my GI specialist. We discussed how my 24 hr. copper results came back very high.
He wants to repeat the test, and if it’s high again, he said we have to get a liver biopsy done. :/ He doesn’t want me to have to go through that, but if the 24 hr. copper results are high this week, it’s a big indication that I probably have Wilson’s Disease, a genetic copper metabolism disorder that causes copper build-up in the body and damages the brain, liver, and other organs. We’ll hopefully get results next week..
The GI dysmotility has been really rough lately. Soft food I eat is not moving well down my esophagus, and the abdominal distention and pain is lasting longer each day.
I’ve been on TPN (IV nutrition) for more than 8 months now..
I wanted to share a few pictures I found on ThriveRX’s facebook page (a company that makes TPN). I thought it was cool how TPN is put together!
