Today was the only day this week without a medical appointment, but I did receive two bits of news.
First, Kaiser approved a referral to an MPD specialist at Emory University Hospital -- I'm very happy to be able to get the perspective of someone who works with a lot of patients with a myeloproliferative disorder.
The second news came in a phone call from my internist. The MRI & MRA done on my head and neck on Monday showed no clots (great news). But it does show white matter changes which could indicate demyelinating disease (multiple sclerosis). She referred me to a neurologist and I've got an appointment for December 2nd.
Hopefully we'll get some better insight to the headaches and blotchy vision that continues to disrupt my daily activities.
My blood pressure is under control and this provides great relief. EKG is normal and I'll continue to calibrate the blood pressure meds with my internist as the hematocrit improves with the phlebotomies and hydrea.
Tomorrow I'll be at Emory for a nuclear medicine test of the red blood cells.
Friday is phlebotomy day -- this will set me up for a great weekend!
Happy Halloween!
1 comment:
Marina,
hello from the other side of the Atlantic, but on the same blogspot (http://myeloproliferativiously.blogspot.com/), and dealing with a similarly disordered blood content!
Usually, US high tech medicine is more advanced than here in Europe. Nevertheless, here some recommendations from my experience:
- In patients with PV, the EPO level is usually below normal. As this test is cheap, it is used as primary test in the Scandinavian countries.
- Since 2005, there is a test to check whether your JAK2 pathway is constantly switched "on", due to a genetic defect. Here, this is seen as "the" lackmus test for PV.
All the best!
Stefan
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