Hi, I've been having copper every day this week and today I had another venesection as well.
My blood tests are still a lot better than before starting the copper treatments but the platelets are still very slowly declining and the liver enzymes are very slowly increasing. The ceruloplasmin level is still below normal too.
I asked the haematologist about all of the abnormalities today but he didn't have any answers.
Every time I come to daycare for treatment they leave my chart on my bedside table but I've never looked at it before. Today I had to move it to use my phone so I looked at the chart. The chart is dated April this year and has my diagnosis as MDS/CNS degeneration. I was told in late 2010 that my MDS diagnosis had been changed to Cu deficiency bone marrow failure. I am also
on the Federal Governments Cancer Registry.
So, I'm asking myself, is the diagnosis on my chart wrong or is Cu def BM failure now classified as a MDS subtype. Or do I still have MDS RAEB 1 and Cu deficiency?
I asked whether I need to have the liver biopsy that the Prof said I should have. The haematologist hasn't had a letter from the Prof so he said he doesn't want to do the biopsy at the moment. I rang the Profs secretary and he said that the Prof hasn't written ANY letters to my haematologist EVER. Don't you just love the way these people don't communicate! Anyhow, I asked
the secretary to ask the Prof very nicely to write a letter to my haematologist so he can be kept in the loop.
In the meantime my haematologist is considering repeating my Lumbar puncture to see if the abnormal 14-3-3 protein is still detectable and that might provide something to gauge the rate of neurological disease progression. Another LP might provide some reassurance that the degeneration has been stopped, so I'm pushing for it to be done.
The USS I had done of my liver 3 weeks ago is pretty good it just shows iron overload, hence the extra venesection today.
You know what, I'm bored with this whole thing, isn't it wonderful. So much better than lurching from crisis to crisis.
Ho hum, yawn.
