Replies to Thanks! Yes my hematologist told me that the Single Lineage Dysplasia is mainly from my platelets….

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Living with MDS (Myelodyplastic Syndromes)

Blood Cancers & Disorders | Last Active: Aug 30 4:21pm | Replies (229)

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@afieldcrow

Thanks! Yes my hematologist told me that the Single Lineage Dysplasia is mainly from my platelets. But I have never had an issue with my platelets! I’ve always had terrible low WBC results. My RBC are thankfully normal. I’m not complaining. I’m grateful I’m considered low risk. I am concerned. I diagnosed myself with MSD probably over a year ago! My friends told me I’m not supposed to do that but you do have to self-advocate! My hematologist is going to discuss my case with his Dr friend at UVA and is going to get back to me. In the meantime we’ll just keep an eye on my labs. My husband wants me to go to UVA for a second opinion.

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Replies to "Thanks! Yes my hematologist told me that the Single Lineage Dysplasia is mainly from my platelets...."

Lori, Volunteer Mentor | @loribmt | Jul 13 8:45am

You’re absolutely right about having to self-advocate. No one knows your body better than you do and when you sense something isn’t right, keep pushing until you find the answers. The self diagnosing…well, I think we’ve all been there. At least it gives us something to do between appointments. 😁

Having a 2nd opinion can be useful in confirming a diagnosis. It may also help you and your husband feel more confident with your current doctor and treatment plan, or point you into another direction. It sounds like you have a good doctor who’s willing to reach out to colleague for his opinion. I’ve always appreciated that collaborative approach that my doctors have taken for a consensus of opinions.

Please me know what you find out. How often do you have labs for follow-up?

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