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I've just had my first Neuro review in two and a half years and the news wasn't good. It seems as if the copper isn't getting past the blood/brain barrier and while it's helping the bone marrow failure it's not preventing the Neuro degeneration.
I wasn't shocked. It appears that to get into the Neuro system I'd have to have such huge amounts it would be lethally toxic to my other organs. So, now it's just a matter of when I decide to cease treatment. I know I would much rather die from BM failure than Neuro disease so that is going to be my option. But I have to keep treating while my parents are still alive and needing me, so it will be a while yet. I hope I have that time available.
I hadn't realised until this exam that my left arm had started "tightening" and I was unable to relax it. My voice has started to become affected and my swallowing isn't always coordinated. My blood pressure has become a big issue with my systolic rarely above 90 and usually a lot lower. I sometimes don't leave the house for weeks at a time and sometimes can hardly even manage to make myself a cup of coffee so I can go a whole day without eating or drinking. I have days that I'm so weak I can barely manage to shower and toilet myself.
The silly thing is that my family don't even notice. I swear that if I died theyd only notice because of the smell or because I wasn't there to sort out their bills or appointments. Sounds selfish, but sometimes, I'd like someone to ask me how I'm feeling!
Sorry.....feeling down, due for hospital on Monday, it always makes me feel depressed.
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