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MDS Myelodysplastic syndromes

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Old Thu Feb 25, 2021, 09:20 AM
rebekahtmiller rebekahtmiller is offline
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Location: keene, nh
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possible mds

Hello Everyone-
I have some questions. I started being followed by a hemotologist 7 years ago, for low blood counts (wbc and platelets). Had a full work up, and doctor thought it was early stages of MDS.
BMB done at the time said. MILDLY HYPOCELLULAR BONE MARROW (55-60%) WITH TRILINEAGE
HEMATOPOIESIS.
B. MILD DYSERYTHROPOIESIS WITH OCCASIONAL NORMOBLASTS EXHIBITING
MEGALOBLASTOID CHANGE AND NUCLEAR IRREGULARITY.
C. SCATTERED RINGED SIDEROBLASTS ARE PRESENT ON THE IRON STAIN (<15% OF
CELLS).
D. Mild Dysmegakarypoisis
Flow Cytometry said There is a subset of T Cells that are positive for for CD3,CD5(dim), CD16, CD56, CD94 T cell large granular lymphocytes

My question is, my WBC has been steadily declining, and i have moved, so i am wondering if i should request another BMB?
Thanks for your thoughts
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Old Thu Feb 25, 2021, 06:30 PM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by rebekahtmiller View Post
My question is, my WBC has been steadily declining, and i have moved, so i am wondering if i should request another BMB?
I'm sorry your white could is dropping. Are your other counts holding up OK?

In answer to your question, it's my opinion that you should find a hematologist with MDS experience, make an appointment, and let them advise you about biopsies or other tests.

You could phone the AAMDSIF for help in locating experts in your area. For example, if Boston isn't too far away, you can find experts at Massachusetts General Hospital or Dana Farber Cancer Institute. You could also ask your previous hematologist for a referral.
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