JAK2 blood test results?!

No any result I have ever had has been conclusive. Your family doctor could have done same thing. Something tells me you will get different result from hospital.

As Clem says, it is very unusual to receive this sort of result.  Probably the hospital will achieve more.  If you can look at the previous postings by Ellen you wil see she underwent a similar long-winded procedure which was very confusing to her from the outset. Eventually a diagnosis was confirmed after a lengthy wait and many tests.  If this helps.  Good luck.

Thank you Clem and Peter for your replies.

mine has been a frustrating journey to say the least with my initial referral to a Haematologist in January to still not being seen! But the goal is in sight and I hope to finally get some answers.  My GP has not been helpful at all and sees me more as a thorn in her side for constantly chasing to see someone. If she hadn't been concerned about my raised red blood cells she wouldn't have referred me in the first place!   Knowledge is a wonderful thing! Thank you for your replies.

kind regards

sue

Hello Sue,

Many years ago during a routine check I was found to have a slight increase in red cell count.  My GP discussed the matter with me and it was decided that It would be preferable to leave things as they were, but to keep an eye on the count.   Several years later under a new GP the count was found to have increased and I was immediately referred to the local hospital haematologist who diagnosed PV.  Since then I have regularly attended haematology dept for tests and various treatments.  Today I am still required to attend for checks etc but maintain a fairly healthy life without too many difficulties.  It has been a very long haul dealing with the differing aspects that have arisen but have been well supported throughout.  It can be a long term process commencing with some uncertainty.  Be positive and maybe your diagnosis will eventually be favourable for you.

Best wishes.   

Peter

Hi suzyQ. I believe the hematologist usually has the blood test done. Then he shd give the results to you. Sometimes people who aren't positive for the jak2 gene mutation, do have a different type of polycythemia vera. However, you won't know until the hematologist confirms it. The Gp may not know much about PV because it is fairly rare. The hematologists are used to dealing with it. At least, mine is. Good luck, hope you get a diagnosis soon. If you do have PV, hope you are like me, and can lve a normal life. I was diagnosed 4 yrs ago, and still doing fine. harrishill

Hi i was diagnosed in December last year.

My Dr told me after blood test results that my red blood cells were high after noticing results from 6 months+ of results. Dr referred me to Haematologist who did JAK2 test and came back positive. I have been having venesections and my red blood come down but so has my iron and white cells up,he has stopped venesections for 9 weeks (was having fortnightly) will have another blood test before my appointment with specialist and if white blood cells still high will be looking at going on chemo tablets. I would change your Dr and ask for a referral to your local hospital. Good luck.

Yes agree with above, we all need a supportive GP. I was dignosed with PV nearly a year ago.

Jak positive and high blood count, my hematologist checked my previous blood tests back to 2005 and said they been high all along and I should have been seen back then.

My body had managed it all by the "female monthlys" she said.

My GP back then didnt only miss that but never followed up on the masses of fibroids that had completly covered my ovaries etc (ultrasounds always come back, cant see them).

Moved to a diffrent location went to a GP as I am now on warfarin, he had a massive attitude, had to get my nurses at work to call him to get my doses, left him quick smart. Did some research on local GP's.

I now have the most supportive GP and hematologist. Been doing the venesection monthly but after the big operations my levels went down, so she given me a 2 months break.

But I'm getting the symptoms back again now, with the itchy skin, headaches with feeling of riddles etc. Still got a month to go.

If the levls are bad she will start me on Hydroxyurea.

Back to you, I really think a supportive medical team is a must.

At a difficult time such as you are  experiencing its so important to know your Doctor has your back. The unanswered questions and tests after tests takes its toll. I got to a point that I didn't even tell my family what was next. You name it I had it. 2 bone marrow aspirations, sleep apnea test where I had to spend the night, heat ultrisound and wear a hear harness for 24 hrs. The list goes on and on since last July. Finally a diagnosis. I can appreciate your frustration. I have not heard of "neither negative or positive". I had to have that one big blood test that had to be sent away for testing. Then after a 6 month period the Hemotologist decided she wanted to repeat the same test as she said for another opinion. The list just went on and on. I then found this forum as I seeking as much information as I could on the Internet. Let's face it this blood disorder is not like a cold going around. Other then this forum, anyone I told said "what!!!!". Never heard of this. This forum has helped me so very much and I am very grateful to be part of it. Definitely a support group that knows the term Polycytemia primary and Polycythemia secondary. Keep all if us posted and take it one test at a time.