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MPN Voice
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Is ET the same as PV?

My hemotologists spoke of both ET and PV, but my medical record had Erythrocytosis as my diagnosis. He tested for Jak2, haven't heard yet about that, I see him again on Tuesday. This is my second appointment in two weeks, what is next at this appointment?

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Hi Starfire, Erythrocytosis isn't a diagnosis as such - it's a statement that there are too many red blood cells in your blood. It can have a variety of causes, eg smoking, living at high altitude and others. If whatever is causing the erythrocytosis can be dealt with then your counts would return to normal. However, in the absence of other causes the doctors will look for Jak2 mutation which, if positive, would confirm PV. If negative, it doesn't rule out PV but would have doctor looking for some other cause. In ET, it is the platelets in the blood that are being overproduced - again docs would look for a cause for this. I believe that there is some crossover between the two, both are MPNs. For example, I have been diagnosed with PV, but my platelet count is higher than it should be. I would only be guessing if I said what would happen at your next appointment, but would hope that the docs might be in a position to give you a definite diagnosis, and then discuss a treatment plan with you. Good luck with your next appointment and try not to worry about it (these conditions are manageable), just enjoy Christmastime with your friends and family.

Take care, Liz

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Thanks, Liz! Hope you have a blessed Christmas and a Happy New Year!๐ŸŽ„๐ŸŽ๐ŸŽ…

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Hi you can have PV and be Jak2 negative. I am and from what Iโ€™ve been told by my haem, Iโ€™m likely to be positive to a different gene mutation. The treatment would be the same, positive or negative.

Make sure you write down all your questions and take them with you to your next appointment and make sure you get the answers you need. It is so easy to get flustered at the appointment especially when your mind is processing all this new information.

Let us know how you get on.

Kindest regards Aime xx๐Ÿ˜บ๐Ÿ˜บ

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Thank, Aime! I have read that you can have Jak2 or not and still have PV. My doctor got me confused when he said both, although I did read they where the same just different names, just needed some clarification. Hoping I can get more information on Tuesday.

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Hi Starfire1970,

ET and PV are not the same. If you go to mpnvoice.org.uk you will find everything you need to know about both ET and PV. This may help with what you need to ask at your next appointment.

Very best wishes.

Judy

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Thank you, Judy!

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hi Starfire, you can find all the information you need here...

mpnvoice.org.uk/about-mpns/...

best wishes, Maz

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Thank you! Maz. I have done that, thank you for all the information I have received! It's a wonderful website!

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Hi starfire, my husband asks ,do you have one? A starfire. We did our first days of courting on a barracuda. He has had a lightning and something else, the name escapes me at the moment. He rode it home stripped it..... My favourite has always been the 70s commandos.

Ps Its me who has ET, regards, Carole ๐Ÿ˜Š

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My Indian given name is Starfire.

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Sorry

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No, it's ok!

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