How long

[Pvera]

How long between your first appointment with the hematologist and your diagnosis? My GP has done 3 blood tests and my red cell count has remained the same for all 3. She thinks it's most likely PV and has made an appointment to see the specialist. How long will it take to be properly diagnosed.

[lizk1993]

Hi there, difficult one to answer as every health board is likely to be different. If it helps, my GP suspected PV and ordered a JAK2 test in March. The result of that was through by April (a surgeon I was seeing for something else told me that). I didn't actually get an appointment with haematologist till June. As the JAK2 test had been done, he confirmed at my first appointment that I had PV. Hope you hear sooner, rather than later.

Liz

[Pvera in reply to lizk1993]

Thank you for the information. I had awful pain in my left leg (just above my ankle) last night. It was like a severe tootheache. Thankfully its gone now but i am worried its part of this pv thing. I'm hoping it was a one off and it won't happen again.

[AngiP]

Hi, It depends where you live, my GP referred me to an hematologist and I had an appointment within two weeks, had several blood tests, a PMB and some x-rays the results were back in three weeks when I got my diagnosis. Hope it is as quick for you as the waiting seems unending.

Good luck

Angela

[James53]

Too many variables to say but in my case I had high haemoglobin and HCT for around 4 months. Monthly bloods by rheumatology. They referred me to Haematology and carried outJak2 and other tests pending. waited 16 weeks to see Haematology. They ordered red cell mass tests with another wait of 6 weeks.

Had rEd cell mass tests and due to see Haematology again in two weeks for results

James

[Wyebird]

Hi Pvera, I can’t speak about PV only ET my haematologist sent me for lots of tests and recalled me for another blood test for an MPN. Apparently it’s a test to look for a mutated gene. This was supposed to take 6 weeks but came back after about 4 weeks.

[bjay22]

In my case, it took one week from when my dr took blood to get my ET jak2+ diagnosis. But my haem has a large lab right on site.

[stillkicking]

Hi Pvera,

I can not answer as to "how long" as I am in New Zealand and things will be very different here, but all of us who have been through this process will understand that anxiety and worry that you will feel. I know that it is hard to be positive about things, but it is so good that your GP has been alert enough to do the tests (not all GPs are!!), and that you will be seeing a specialist. Hopefully, a clearer picture of what is going on will be arrived at soon.

Regards the sharp pain in your leg above the ankle, I think that you should let your GP know about this in case you have some trouble with thrombosis. If it was an isolated event, it was probably "just one of those things", but as you are being checked for possible PV it would be good for your GP to be aware of it.

In the mean time, very kind thoughts to you. This is a very caring forum, and I know (from my own experience of being helped) that people here are very happy to help you through this time as best we can. Do keep in touch and let us know how you are getting on.

Peter

[MichaelS]

In 1983 I gave my 29th pint of blood. 2 days later my GP phoned me at work telling me I needed a blood test, which I gave that day and the following day I was told they had arranged a visit to the local haematology for the next day. Venesection and lots of tests and then following after 2 or 3 venesections it was diagnosed as PVR. For me they suspected it from the start but proper diagnosis all within about 2 weeks. JAK2 was unknown then!