I had a meeting with my consultant on Wednesday after having some more tests.
I have been diagnosed With Polycythemia JAK2 for over seven years now and they have been baffled as to why I still have very high Erythropoietin at 205 when it should be about 15. I have numerous venusections but the levels remain high.
The consultant has now stated to me that I need to go for a head scan because if all the tests I have had done so far prove negative as they have done then its possible I may have a small Brain Tumour which is causing the problem. Obviously I am quite worried now and wondered if anyone else has been in the same situation.
Looking at the links it shows that Polycythemia is a secondary to a brain tumour and not the other way around which technically means maybe the brain scan should have been done some time ago when they could not understand why i had it. I have always been told that my Polycythemia was Primary.
Happy New Year to you all. Noel X