[Chirley]

Hi,

I went to the new daycare yesterday and was assessed by a Registrar and then the Haematologist. I have been accepted for treatment at the centre.

There are two issues.....the Haematologist whilst agreeing to oversee the copper treatments will not take responsibility for the underlying cause of the problem. He told me that it is well outside his scope of practice, that he doesn't know anything about copper transport mechanisms and he will ONLY monitor my blood copper levels and provide the treatment. He told me I had to find the appropriate medical practitioner myself. I don't know what kind of doctor I should try to find to care for the whole syndrome as opposed to just the treatment component. The Prof that I used to see says that I don't need to see him any more because he can't help me, and the neurologist I used to see doesn't want to monitor my condition...he only wants to see me if I have an
acute deterioration.

Any ideas? Would a General Medicine Physician be okay, or maybe an Endocrinologist. Do I need someone to oversee the underlying syndrome at all?

The other problem is that this new daycare NUM assured me that they could access the Copper Sulphate easily...then I get a phone call this morning from her saying that the pharmacy hasn't been able to access the Copper but they are still working on it and she is still confident. Fingers crossed.

If the copper is available, I'm due to start treatment on Monday.


Regards

Chirley