Diagnosed about3 months ago with PV. My GP said I had primary PV and refered me to haematoligist, who said I had primary PV. Have had 3 venesections in 6 weeks and at last appointment said blood within limits and that the frequency of venesection was too frequent and would probabaly put me on tablets.
I have had ultrasound scan and spleen normal, awaiting results of JAK2 test, but apparently not all PV JAK2 is positive. Reading the internet sites PV usually has large spleen and JAK2 positive. Bit confused - does anybody else have similar.
I was diagnosed with PV in April of this year. I had 11 venesections in 11 weeks until my blood levels came down to normal levels. The JAK2 proved positive in my case but my spleen shows NO enlargement. All I can say is there doesnt appear to be a 'normal' development......everyones symptoms seem to be different. One thing I have found out is that with treatment life expectancy appears to be normal so thats all right then aint it. Good luck.
Many thanks for the reply. The more I read the more it becomes obviuos that there is no normal. JAK2 result has come back negative. So far haematoligist and GP have been great, everything moved so fast. Haematoligist even wrote me between clinics to confirm results of scan and JAK2. As you say life expectancy should be normal. Good luck for the future.
The difference in the JAK2 test and non positive normally means the difference between primary and secondary polycythemia, the latter being caused by another reason, for example, heart condition or some thing else, once that condition is cured the secondary polycythemia goes away, this can casue confusion, the primary is caused by a viral infection that causes the cells to mutate and reproduce in a default state, hence the problem becomes progressive and never goes away.
The symptoms are so varied for all individuals concerned, i hope this helps a little, im 18 months in but still very confused, so any info you may find out as time goes on would be nice to hear.
Thanks
Gavin
Hi - not sure if anyone reading this has similar problems. I have PRV and due to the blood letting I have low iron levels.This causes restless leg syndrome etc which in turn causes severe insomnia. If anyone knows how to get around this problem I would be glad to hear
Tim