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Living with MDS (Myelodyplastic Syndromes)

Blood Cancers & Disorders | Last Active: Aug 30 4:21pm | Replies (229)
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Profile picture for afieldcrow @afieldcrow

Hi! I’m Allison! Was just diagnosed on Monday with MDS Single Lineage Dysplasia. I have the TET2 mutation. Mainly my platelets are the problem but I’ve never had any problems on my bloodwork with my platelets. I was diagnosed with Lupus in 2006 after my second daughter. I’ve had low WBC ever since. I average WBC of 1.2 all the time. I am so tired. I have low neutrophils. Neutropenia…leukopenea….low thyroid.. I’m a walking Auto immune person. I have bruised arms and legs. I can’t wear shorts because my legs look horrible. I’m
Nauseous a lot. I’m sick and tired of being sick and tired. 🥺

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Replies to "Hi! I’m Allison! Was just diagnosed on Monday with MDS Single Lineage Dysplasia. I have the..."
Lori, Volunteer Mentor | @loribmt | Jul 12 5:18pm

Welcome to Connect @afieldcrow…Alison. I love crows so I can’t help but admire your @name! Just now reading a book called The Comfort of Crows; A Backyard Year by Margaret Renkl. ☺️

I’m sorry to hear that you’re not feeling on top of the world right now and see that you’re newly diagnosed with MDS. That’s a blood condition that can affect production of one or more of the blood cell types. You mentioned having low platelets but your neutrophils (WBC) are also low. How are your red blood counts?
Has your doctor talked to you about possible treatments?

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