Polycythemia jak2&exon12 negative Frequent infection sinus

[Gloriusezra]

Dear respected mpn family..

I have some question to ask and any expirience same with me. By the way Im sorry for my bad english. Im from indonesia and in this country the reasourch and information about this is very limited. And not many good hematologist in here.

First.. I have been diagnose with this polychythemia with high red count (HB 19.8, HT 53%, RBC 6.14) and rest of them was normal. they do first phlebotomy 4 month ago for 400cc. And they do all test like jak2 test.,After 1 month i go for test again and i have realive all my count just back to normal and the jak2 all test was neg.. They say MAYBE i have some problem with my breathing and lung. My EPO level was normal.I admit that they dont running another test like spleen and biopsy.

But after 4.5 month my blood was rise again now HB 17.6 HT 50 RBC 6.11 im so scared and and my anxiety was up and down. I admit that i dont have any symptom except musscle stiffness and is gone after venesecction.

My question is.

I noticed something since this everything happen my alergic and infection on my sinus and throat was so bad. Are this happen because my spleen was enlarge do high RBC? I notice when my alergic was bad my count was high too. I do some research that enlargespleen cause frequent infection.

And anybody have chest pain too? Ia have a little chest pain i dont know because of my anxiety or something else.

I read about secondary thing. About cpap or sinus can cause me sleep apnea and low oxygen saturation.

I have a hypertiroid problem for a year are this related to my polycythemia?

And anybody here know that secondary polychythemia can have enlargespleen? Im really curious about that.

Anybody have same problem and resolved this problem?

Best regard Glorius

[Gloriusezra]

Still no clue

[Mazcd Partner MPNVoice]

Hello Glorius, sorry for the delay in replying to you, I have asked Prof Harrison at Guy's Hospital and she has said that she is unable to give you medical advice as she doesn't have access to your medical records but she can give an answer in general terms, which is:

Splenomegaly is uncommon in secondary polycythaemia unless there is liver disease.

Sinus disease and sleep apnoea may be related.

It would be advisable for you to ask your haematologist and doctor about this.

Best wishes, Maz

[Gloriusezra in reply to Mazcd]

Tq maz.. For the rep.

So the splenomegaly was the base line to decided That was pv or not right?

Really confuse now.. My haematologist tell me to bone marrow biopsy but i will refuse for sure. Any suggestion for another test that exclude biopsy?