Caitlin DeAmbra

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  • March 4, 2020 at 1:11 pm

    The bone marrow came back normal, but we’re waiting on the rest of the test. Thank you Edith. The hematologist is retesting me for some things the neurologist already tested, which is really very frustrating. Hematologist thinks that the IVIG is causing my blood work strangeness, because he Googled (yes, Googled!) neutropenia and IVIG, and found what we already found, that high dose IVIG and IVIG in pediatric patients cam cause neutropenia. He doesn’t care that my RBC, hemoglobin and hematocrit, as well as protein, calcium and eGFR keep going out of whack. And I’m on half the dose of what they consider “high dose.” But he wants to rerun the tests we already ran, so more bloodwork.

    Honestly, I’m so frustrated at this point I’m ready to give up.

    February 25, 2020 at 9:08 pm

    I just had my bone marrow biopsy yesterday, and have my follow-up appointment this coming Monday. Blood work yesterday was again all over the place. Here’s hoping for some answers.

    Anyone here have polyclonal gammopathy with their issues? Monoclonal came up normal, which generally (though not always) rules out multiple myeloma, but not lymphoma or leukemia.

    At this point, the biopsy results can’t come soon enough.

    January 20, 2020 at 6:27 pm

    Thank you so much for posting! I know it was some time ago, but I’m going through something similar. My hemoglobin, hematocrit and RBC are all low, and have been decreasing for about 18 months. However, my TIBC is low and transferrin is low normal, so I was curious to know if CIDP can cause anemia of inflammation/chronic disease. My eGGR had also been going out of whack, then it’ll be fine, then I’m back to suddenly level 3b kidney disease. There’s no lead up to it, my kidneys are just suddenly in and out of ‘acute kidney failure’.

    For most of my life doctors just want to blame everything in CIDP, and stop doing any tests, which is really frustrating! At this point, I’m lucky to have a really amazing hematologist in an oncologist office who loves rare diseases and weirdness. Well, I’m your girl!

    Jim-LA, thank you for sharing! I’m ready glad I found this post, it gives me hope that doctors are working to figure out what’s going wrong.

    Currently my HGB is sitting in the low to middle 9s, but my bloodwork is a trainwreck so there are positive results all over the board: WBC, RBC, Hemoglobin, hematocrit, Neutrophils, eGFR, Albumin, TIBC, A/G ratio (0.6) are all low. Calcium is high off and on.
    Next week I see the hematologist again.