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Well, kind of good news, I think. My spinal lesion isn't as bad as first thought....as Charlie Sheen said.......WINNING!!
Then, I get told, the disease IS progressive, I have got brain damage as well, I can expect a rather unpleasant death. HOWEVER, he can't give me any time frames. There was mention of a brain biopsy but thank goodness he didn't follow up on that.
I was advised to increase the dose and frequency of my copper infusions in the hope that it would have a trickle down effect into the CNS. It was left to me to decide whether I chose this option depending on quality of life issues.
Now that my Aunt is living here I'm more inclined to have treatment more often because I know if I'm in hospital my parents will have someone available to keep an eye on them and help when needed. It's a load off my mind.
I'll have to think about it.
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