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Primary Myelofibrosis diagnosis in 40’s
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (14)Comment receiving replies
@scottmatteo
I have not recieved a diagnosis but reading your comment sounds like me. I am 47 years old and have been having bone pain, fatigue, bone marrow biopsy show increased atypical megakaryocytes and reticulin mild to moderate fibrosis MF 1-2 . However, because all my labs were normal except my platelets continue to trend down and i didn't have enlarged spleen or the mutation ....I guess i didn't meet the requirements for diagnosis. my hematology doctor suspected autoimmune disease. I see rheumatologist and after 21 test everything was negative /normal. My symptoms got worse and i started having pressure marks on body, along with platelets still trending down (not emergency but now thrombocytopenia but hgb is normal) and mild enlarged spleen 12.8 i have been referred to Mayo because my hematologist feels i need higher care. I have my first appointment June and really hope I get answers. Thank you
Replies to "@scottmatteo I have not recieved a diagnosis but reading your comment sounds like me. I am..."
@kasey78 ask as many questions as possible. The team in BMT at Mayo is large educated and well oiled. Pre BMT you’ll meet with a nurse and Doctor. Then many great PAs NPNs etc. nursing staff is phenomenal caring and of course familiar with what to expect. If you’re pushing toward a transplant you’ll want to get DNA testing so they can find a match for you the longer they have to look the better. Please ask anything I’m happy to answer the best I can. Many websites can give you lists of questions etc MPN etc Mayo has a good list. There is a book at Mayo that is a bit dated but thorough in what to expect at each stage of your journey. Think it was a coupon for a free BMT book and I’m sure you could ask one of the nurses. Be positive strong and know it can always be worse no matter how shitty you feel. You can do this and thrive.
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@kasey78 glad you’re getting help at Mayo. They saved my life; one year post BMT in two weeks. Not that they let you choose but I highly recommend Dr Shah. Especially if you’re willing and able to laugh in the face of the potential diagnosis and treatment… he was honest with good or bad news with an ability to explain process and complicated issues plainly. Keeping me and my wife calm as complications came up and subsequently treated as needed. You’re at an age that isn’t typical for the diagnosis similar to me and I took it as a blessing as we are able to recover quicker than those a few decades older.