newbie 1st appt soon jak2 pos or neg ??

[nightssky]

hi all

my first haematology appt in about 6 wks my Gp refered me for possible Prv

just wondering what will happen if my test comes back neg for the jak2 test ?

how does that affect the treatment plan I may or may not receive ?

Are you treated no so seriously if you test as neg for this mutation ?

is it back then to Gp for another / different diagnosis for another condition if so what could be the other cause for these types of blood results and symptoms ?

I mean any one misdiagnosed with Pv and eventually it turned out to be an entirely different condition altogether if so what ?

thanks in advance

[redumbrella]

Hi nightssky,

I am no expert on this issue but for whats its worth I was diagnosed 13 years ago with PV and was put on Asprin and Venesections, sometime after I was found to be jak2 neg. The treatment was and still is the same today.

Interestingly I raised this matter at the recent MPN Forum in Dublin asking if being Jak2 neg made any difference to our MPN's, the reply from the Haemotologist was that being jak2 neg today do'es not mean you will always remain so and that you will be still regarded as having an MPN.

I don't know if you are aware of this but there are only 5% of those with PV are jak2 neg.

Wishing you all the best on your upcoming appointment.

Garry

[nightssky in reply to redumbrella]

hi red umbrella

thanks for taking time to reply ...very useful info you have provided much appreciated cheers

[Ebot]

If you turn out to be Jak2 negative you will be tested for other mutations. They are plenty of people here who are triple negative. It may take a while to establish the exact status of your MPN. Initially I was treated for ET even though my BMB (bone marrow) results didn’t quite match the WHO criteria for ET. Some years later when my HCT started to rise the diagnosis (following a further BMB) was revised to PV. Don’t expect to get immediate and full answers. The one thing about having an MPN is that it is not static - counts, symptoms, understanding, management - are constantly evolving!

[Aime]

Hi, you’ve been given some really good advice already. The jak 2 negatives, like you and me, must be special or that’s what I try and tell myself! I was told that I would be positive to a different mutation but it wasn’t worth finding out because the treatment would be the same and condition is taken as seriously as if you were Jak2 positive. I was certainly given a PV diagnosis.

Write down all these questions before you go to your haem appointment and insist on getting answers to them all. However as Ebot says our MPN can change and it does take a while to get tests done, get results, etc and it is an anxious journey but take it one step at a time and remember we are all here for you.

Kindest regards Aime xx😺😺

[nightssky]

thank you for your reply will take your advise cherrs