[Chirley]

I have just returned from my GP and I was given a copy of my last BMB results from early 2011.

The conclusion states....the dysplasia persists but has reduced (no vaciuolation, reduction in ring sideroblasts). The counts have also improved with the replacement of copper, however, it still shows that the patient has an underlying myelodysplasia.

Earlier in the report it makes note of dysplastic megakaryocytes which is not a feature of copper deficiency.

Blasts were noted to be high normal at 3%. This was down from 8%.

Now I'm really confused. Did the copper alone improve the MDS? Is it, has it ever been MDS? Did the Vidaza work?

Does any of it matter as long as I'm well?

The GP has referred me to a Haematologist at Greenslopes as well as to a General Physician. The new treatment centre is excellent for receiving the copper treatments but unfortunately the medical input is rather poor. I have seen the medical staff four times, each time it has been a new doctor and each time they didn't know what my treatment was for or how to interpret the blood results. Yesterday the doctor told me that my blood tests were excellent. I asked what my copper level was, she said 30!! I said that it wasn't good then. She asked why and I said that it was way above normal levels and it needed to be correlated with the ceruloplasmin levels. She said "oh, well, that's still well below normal"! I'm presented with ...was my blood test contaminated and useless (has happened a lot) or is the copper level really high, and with a low transport protein this makes a high level more toxic. Then I asked how my liver enzymes were. Turns out they didn't do that test! The hospital pathology is trying to save money so they now only do liver enzymes as a specific request rather than as part of a biochemistry profile and the previous doctor didn't think of asking for it.

I'm supposed to be on a 3 weekly venesection program to reduce the iron burden on my liver but the doctors at this treatment centre refuse to order them. My ferritin has come down below 1000 and they are happy with that but unfortunately, my liver isn't. The GP told me today that if I don't have the iron reduced I will definitely progress to cirrhosis which is irreversible.

Looks like I'm on the merry-go-round again.

At least now I have a very competent and enthusiastic GP looking out for me.

Regards

Chirley