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This isn't related to bone marrow failure but is related to the underlying copper deficiency.
I had a repeat gastroscopy on Thursday just to check that my stomach had untwisted completely and everything looked reasonable.
The gastro doc did find that my oesophagus wasn't working properly (full of saliva but stomach was empty) and this explains why my food still gets stuck and I vomit about every second meal. He thinks my Neuro condition is worsening and causing this problem.
Because I've had a pretty rough couple of months we aren't going to do anything about it unless I start having problems like losing too much weight or breathing in the vomit etc.
This is extremely disappointing because I've been having my copper replacement infusions regularly. It seems as if replacing the copper doesn't necessarily mean it's able to be transported effectively to the nervous system. I've also noticed lately that even with the copper infusions my blood counts never quite recover any more. My Hb used to climb to normal or almost normal levels after an infusion but now the best they go is into the low 100s.
I wish there were other people with this same problem that I could talk to. I have no comparisons, I don't know if this is the expected course.....whether I'm doing well or if I should be doing better. I don't know if this condition is terminal, if I will become bedridden, if I will become confused/demented. While the Neuro disease is unpleasant so is the uncertainty and isolation.
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