Mutations & mpns.: Do anyone know what the real... - MPN Voice

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Mutations & mpns.

Tico profile image
Tico
7 Replies

Do anyone know what the real significance is regarding whether or not u ave gene mutation or not.i'm etjak2 but still unsure whether it makes any difference being positive or negitive? When i questioned my haematolgist about it,he replied 'oh its nothing to worry about' but i noticed it is in large capitals across my file! Has anyone ad a detailed talk wiv their haemo & understands what difference being jak2 positive or negitive makes? Thanx.tico

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Tico
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Ebot profile image
Ebot

Jak2+ provides a definite confirmation of an MPN. So I’m not surprised it’s written large on your file!

Tico profile image
Tico in reply toEbot

Thanx ebot. Since posting about mutations & their significance i've did a lot of research into it & it seems u can ave the jak2 mutation & not ave a mpn but cud go on 2 ave 1 later on in life but not always apparently! Their seems 2 be so many factors involved,ie, genetics etc,the only thing we know is we were unlucky. Atb tico.

zvinkovic profile image
zvinkovic

Hello,

JAK2 also makes you more susceptible to blood clots.

Best wishes,

Zlata (ET since 1999, CALR+, Roferon-A 6*3 miu, Aspirin 100 mg)

JackLina profile image
JackLina in reply tozvinkovic

Thank you for this information. I was not aware of that. Now things are dropping into place. I just though JAK2 was the reason for the MPN and therefore it was not necessary to identify another cause. What I would really like to know is WHY? Why do I have that mutation? What caused it?

zvinkovic profile image
zvinkovic in reply toJackLina

Hi Penelope,

I also would like to know, but for now it is a mystery, especially because there is more than one mutation (mine is CALR, some people have MPL, and there are also subtypes of mutations). I was diagnosed in very stressful period of my life, 2 or 3 weeks after my little brother fell of the balcony, so I always thought that had some impact.

Doctors are only focused on blood counts, but as a patient I would like to know the answer what caused the mutation. I hope one day soon we will know more.

Best wishes,

Zlata

JackLina profile image
JackLina in reply tozvinkovic

Mmmmmnnn. But most likely that no-one wants to know really because it is likely to be some drug or other.

Before the platelet count being recognised as too high (and actually meaning something, which wasn't noted by my GP) the GP said it was probably due to the clopidogrel I had been taking for years. I have never bothered to pursue this because it makes little difference. what am I going to do, prove it was the cause and claim millions....? Not a prayer. so no point. I just work on getting through days and trying not to stay angry too long.

EleanorPV profile image
EleanorPV in reply toJackLina

All researchers want to know why but as of yet no one has made that breakthrough. We are in the fast world of research. Someone will come up with the answer soon.

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