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Originally Posted by Lauren H
I've had the following tests done: CMV screen, serum protein and serum immune electrophoresis, B12 and folate tests, EBV, ANA, rheumatoid titer, anticardiolipin antibody, flow cytometry for CD55 and CD59. My hematologist ordered these tests at our last appointment: HB-F quantitative, ANA, Immuglobulins, flow cytometry for Rlo, LGL, and PNH. I don't think any of these have yielded answers.
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Whoa! Lauren. They are really throwing the book at you, aren't they! When a routine well-physical turned up my severe anemia, which turned out to be MDS, I couldn't believe all the different tests my docs ran, even after the diagnosis.
Who knew blood could be so complicated!
All my stuff like PNH came back negative, so they eventually settled on a plain vanilla Refractory Anemia type of MDS. My impression is that a lot of the tests are used to rule out stuff -- there's kind of a process of elimination involved, and, as Chirley's story indicates, sometimes the situation evolves over time into something the docs can more easily pin a label on.
If your bone marrow biopsy included chromosome stuff, it will be in a section called "Cytogenetics," and will involve talk of normal and/or abnormal cell lines or clones. There's often a bunch of fancy chromosome shorthand involved, as well, like 8+ or dup1 (q21q32). A lot of MDSers have mutant stem cells that are wildly reproducing (my wife compares them to the Borg) and crowding out all the nice civilized stem cells. If your doc got really fancy they will have done something called FISH, which, in my reports, is called Molecular Cytogenetic Analysis. They use this to look for specific troublesome chromosomes.
Looks like some (but not all) cyclical neutropenics have a particular chromosomal abnormality, which I would think they would test you for.
How's your hemoglobin level? And, this will sound dumb, but have they checked your copper? I have a copper deficiency (who knows why?) and that's known to mimic (or exacerbate) MDS.
All of this is a royal pain, particularly when you don't even know what you have yet, and whatever it is, it's probably some weird disease no one ever heard of. But a lot of blood disorders are treatable, so hang in there.
There's a bunch of folks on these forums who know a lot more than me about this stuff, so keep asking questions and they'll help you figure out what your doc is talking about and what you might want to ask him or her.
Take care!
Greg