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MDS Myelodysplastic syndromes

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  #1  
Old Tue Dec 18, 2012, 09:52 AM
Larsonec Larsonec is offline
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finger sensitivity/discoloration

my father has myelofibrosis and receives transfusions three times per week, sometimes RBC but almost always platelets. He recently developed what he describes as extreme sensitivity in one of his fingers that is now spreading to a second finger. His vascular system was evaluated and no abnormalities. Vascular surgeon thought that the RBCs or platelets might be "clumping" and causing the problem. Seems like if that is the case that his blood flow would be impacted, but apparently it isnt. His hemotologist isnt sure what the problem is and I am wondering if anyone has ideas, or what type of specialist would address this type of complication??
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Old Tue Dec 18, 2012, 01:27 PM
Birgitta-A Birgitta-A is offline
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Myelofibrosis

Hi Larsonec,
You know this forum is for patients with MDS, AA and similar diseases - there are several support groups for patients with Myelofibrosis like this one http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=MPN-NET

Perhaps your father has erythromelagia that can be a complication in patients with Myelofibrosis.
Kind regards
Birgitta-A
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Old Tue Dec 18, 2012, 03:08 PM
Larsonec Larsonec is offline
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Thank you for the reference, I will check it out. I believe that my father still retained the diagnosis of MDS after the myelofibrosis was diagnosed. Not entirely sure, but he was treated as only having MDS for quite a while.
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Old Wed Dec 19, 2012, 04:49 AM
Birgitta-A Birgitta-A is offline
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MDS

Hi Larsonec,
Sorry! I misunderstood your post - many patients with MDS (like me) have severe myelofibrosis.
Kind regards
Birgitta-A
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