Does this sound like PV?: Hi, been dealing with... - MPN Voice

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Does this sound like PV?

trc1962 profile image
4 Replies

Hi, been dealing with what was thought to be a rheumatological disorder and just have not gotten a diagnosis. Saw a specialist in Seattle and she wanted a complete cbc and she found I had some elevated counts: super high wbc, high rbc (5.60), high hematocrit (50) and high hemoglobin of 16.5. I have been very tired, weak feeling and my skin is red on my face and other areas. I have the issue of the flushing, itching and burning feet and hands and I itch. I have been taking antihistamines and it helps. I have suspected a mast cell disorder for awhile as I can't eat foods high in histamine or my body goes crazy. It has cut down so much of what I can eat. I just was hoping from input of others. My counts have been at the top of the range for 2 years and are climbing higher now. Thanks

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trc1962
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francesb profile image
francesb

Hi, I had very high WBC and had a bone marrow biopsy which indicated an MPN which so far is unclassified as I also have high platelets and they can't get a clear diagnosis except it's definitely a myeloproliferative disease. Maybe you need a bone marrow biopsy to give you a diagnosis as this seems to be the best diagnostic test?. Good luck and I hope you get some answers soon. Best wishes, Frances

trc1962 profile image
trc1962 in reply to francesb

Does anyone understand how you can a high hemoglobin reading but a low mean corpuscular HGB? My bloodwork revealed this and I don't understand? Is it saying I have high hemoglobin in my blood because there are so many rbc's but each cell isn't holding much hemoglobin? Maybe I am not understanding this and hopefully some of you who read your cbc's can tell me. Thanks.

jane13 profile image
jane13 in reply to trc1962

it is possible for MPN's to produce abnormal blood cells e.g.: lots of small "sticky" platelets after a venesection

Mazcd profile image
MazcdPartnerMPNVoice

Hello trc1962, it would be best if you ask your specialist in Seattle to explain the results of the tests and ask her if she can give you a definite diagnosis of a MPN and which one. In the meantime have a look at our website mpnvoice.org.uk there is lots of information on there which might answer some of your questions. Best wishes, Maz

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