Hello,
I just got my last copper result and it has fallen again to 4.8 (13-25) despite increasing the dose to 3mgs twice a day.
I also got my MRI result which shows the same level of demyelination in my cervical cord but increased demyelination in my thoracic cord. The haematologist wasn't happy with these results and got me an urgent appointment with the neurologist who I ended up seeing later that day. The neurologist wasn't concerned and said that there was nothing he could do about the demyelination anyway and that my disability is almost certainly permanent. He did say I will have to go back on the copper injections and I told him that the haematologist offered to arrange IV copper. His response was that IV copper "is, like, a million dollars" (shades of Paris Hilton) and to stop whinging and just give myself the needles.
I discussed this with my haematologist and after a lot of thought I've decided to stop treatment. My haematologist said that he wouldn't think badly of me and that he would still provide any supportive care that I need. My family accepts and understands my decision. So now, there's no point to the weekly blood tests, weekly hospital visits or the neuro rehab that I was going to do.(the neuro said that it wouldn't do any good anyway)
So I'm going to enjoy my respite from all the medical stuff for the first time in many years. I hope I don't get withdrawals.
Bye for now.
Chirley