i have been waiting patiently to see my Haematoligist (after changing hospitals) and finally have my appointment a week tomorrow.
in the meantime I paid privately to have the JAK2 blood test. I have just received the results which have come back as "equivocal ( neither negative or positive) and to repeat in four to six weeks. Has anyone else has this result? I'm so confused as I thought it would give me a definitive answer.
advice from anyone please??
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
If your not happy with your doctor then it's time for a change. Their supposed to be able to listen and put you at ease.
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
Thank you for replying it's so nice to hear from everyone! It's so frustrating just sat waiting when I'm someone who is proactive in getting things done (ex secretary). I went on line and used a company for my private blood test so only have myself to blame for trying to get answers quicker than seeing the Haematologist. I look forward to giving everyone an update a week tomorrow! Fingers crossed for an all clear result otherwise I will be relying heavily on my new found family.
thank you for sharing your journey and wishing you continued good health.
kind regards
sue
thank you for your response it's very much appreciated. Wishing you continued good health.
kind regsrds
sue
i will be asking to seeing another doctor at our surgery when I next go back.
wishing you continued good health.
kind regards
sue
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.
Thank you for sharing your journey. My red bloods have been high for six months too hence the referral but due to the consultants PA sending my file to Gastroenterology then deleting me of the system followed by four weeks of being fobbed off with "it's on his desk" "he's on holiday" " I've put your referral to the top of the in tray" this has dragged on since January. I asked my GP to refer me to another hospital and I finally have an appointment a week tomorrow. The JAK private blood test was my way of going forearmed with my diagnosis (or not ) only to be disappointed with the inconclusive result. It's so frustrating not knowing what's wrong (or not) but maybe answers soon!
I hope your bloods stabilise soon and you feel ok.
i watched an interesting video on the MPN website which was really helpful.
kind regards
sue
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.
Thank you for sharing your journey it seems many people have struggled to get the support they truly deserve. I hope you get your levels sorted very soon!
thank you once again for your support its very much appreciated.
kind regards Sue
hi Ellen
thank you for your message. After all this frustration and inactivity I imagine next Tuesday will result in a barrage of tests etc. But all least I will be in the hospital system officially!
until then it's just keeping myself busy but when I need a rant it's so nice to have so many people being supportive on the support group.
Kind regards Sue
All the best with the appointment .. Hope you get a result as it is horrible living in limbo. Deb.
I was really hoping to give an update following my hospital appointment tomorrow but due to the doctors strike I have had my appointment cancelled until the 17th May! I'm so frustrated!!!!
Hope everyone else is doing ok!
Hi Suzyq,
Approximately 95% of all PV patients have a mutation of the JAK2 gene in the blood test.
So around 5% of the population have never confirmed by the JAK2 test and you maybe the one of them.
Doctors strike????? Can you believe this! This is beyond frustrating. I can relate to how you are feeling because it was months and months of testing' waiting' blood work after blood work. Each test coming back normal and yet my red blood cell levels at times were so high I had to have plybotomy treatment to bring the levels down. Two bone marrow aspirations, you name it I had it and like you all I wanted was to know the cause so I could receive the right treatment. This forum really helped me to be able to vent my frustrations. Other then the frustration how are you feeling?