← Return to Triple-Negative Polycythemia Vera with MF-1 – Looking for Similar Case

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Profile picture for kasey78 @kasey78

I haven’t been diagnose with anything yet. My first appointment is next week hopefully I will have answers. 47yr only abnormal lab is thrombocytopenia.
January- bone marrow increased atypical megakaryoctes, mild to moderate fibrosis mf 1-2 , triple negative . No splenomegaly
However now enlarged spleen ( very uncomfortable) and I think my liver might be enlarged too. Hoping to get answers and relief.

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Replies to "I haven’t been diagnose with anything yet. My first appointment is next week hopefully I will..."

@kasey78 My diagnosis took almost six months because several physicians were unsure how to proceed and seemed completely lost. One doctor even suggested that I was looking for a disease, despite my blood counts being significantly elevated.
Eventually, I found a hematologist who was experienced with myeloproliferative neoplasms. I traveled about one hour by plane to see her, and she was able to establish the diagnosis.
Regarding my spleen, it is currently normal in size, but I should mention that I am being treated with ruxolitinib (Jakavi), which can reduce spleen enlargement.
Please keep us updated on your progress. I sincerely hope you are able to find knowledgeable specialists who can help you reach a diagnosis and receive the appropriate treatment.