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Living with MDS (Myelodyplastic Syndromes)

Blood Cancers & Disorders | Last Active: Dec 27, 2024 | Replies (98)
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@gothman

My Dr does not have good bedside demeanor. Very short on details from my questions. It is a “let’s see what happens.” Next blood draw March 27. Counts are as he says “in the safe zone so far.” He did say this would likely move to AML. That scared me. Right now, against his suggestion of not reading about MDS, I am learning a lot. My wife just had a strong a fews months back. So I am busy.
Thank you.

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Replies to "My Dr does not have good bedside demeanor. Very short on details from my questions. It..."
Lori, Volunteer Mentor | @loribmt | Dec 22, 2024

I understand the ‘not going down a rabbit hole’ of mis-information that we can find on the internet. But I also feel that knowledge is power and if you’re in the potential group for progressing to AML, then you definitely want to be proactive. I had AML and you do not want to wait to that point.
You might consider getting a second opinion. Especially if you’re not getting a good vibe from your doctor. We don’t have to be best friends with our doctors but we do need to feel that they are concerned and part of our team…and not holding us at arm’s length or being dismissive.

I’m sorry to hear your wife had a stroke. Is she recovering well?

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