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Hi Jules, sorry to hear you've been sick.
Believe me when I tell you, I know how frustrating it can be when tests aren't diagnostic. It's hard to just accept that complete trust that things WILL get better without a diagnosis, and hoping that the treatment is appropriate.
Did your BMB show any changes from the last one? Platelets holding up? When I had an infection in the Achilles tendon my Hb dropped 20 overnight and for the first time ever, my platelets dropped as well. The doctor told me that fever can cause the red cells to die quicker and the platelets were being attracted out of the blood stream and into the area around the infection. Hence the blood count drops.
I think you've been doing really well on the watch and wait plan. Hope it continues.
Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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