I have been for testing and am booked for my bone marrow on the 25th.
My hemocrit is still high but slightly lower than January this year, Hb and red cell still elevated too. Weird it slightly lowered but not anywhere near enough to normal or below high normal.
Chest X-ray clear, echocardiogram good, my heart device is still in place, spleen & liver ok although the guy was in a rush and did it in 7 mins!!!
No autoimmune disease active!!
Waiting for JAK2 to come back.
It seems it's looking likely to have either JAK2+ pv or idiopathic pv.
Having said that he said my lungs were quite wheezy even on puffers.
I'm still getting joint and bone pain, itchy after a tub, & headaches even with it slightly lowered hemocrit (it's still elevated above normal though). I'm still debilitated with fatigue.
So with the spleen even though I ache right there and it radiates up my shoulder and I get hiccoughs and feel
Full quickly, does that mean my spleen is ok or does it just mean it's coping somewhat right now?
He has mentioned venesection to bring the hemocrit down, first it the bone marrow test.
Not looking forward to it but I guess it has to be done.
Thought I would touch base, if you think I am missing anything please do say! You guys are so helpful!!! Thank you so so much!!!
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Jennyfluff
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Good luck with the BMB. It really is OK! I mean not something I would actively seek out as a special treat (!) but do-able. Last one was a bit of a tussle, me and the young Doc going three rounds in the ring, but really if you keep your head (mind) in the right place (i.e. well away from your buttocks!) it's fine. Xx
Hi, I had my BMB totally pain free. The nurse who did mine was amazing. She did say when she was extracting the marrow to take a deep breath as once she has committed to drawing the marrow out she CAN'T stop.
Well, no need for a deep breath as I felt NOTHING !! Only thing I did feel was the local anaesthetic jag going in. I know not everyone has a positive experience but I do hope you have a good experience. Let us know how it goes.
Thank u so much Lainy!! I'm not looking forward to it but know it needs to be done. How awesome is the nurse who extracted urs!!! I bet it's because she didn't use tons of force! I used to do phlebotomies and people would say oh I didn't feel a thing!!! I'd say well you don't need to force the needle in harshly it goes in with a little gentle encouragement. Lolololol thank you so much for sharing and I'm so glad it wasn't a horrible experience for you! Hope mine is the same!!! I have Dr Pavlu from hammersmith doing mine.
I would almost be 100% confident that you will not feel a thing during the procedure, and perhaps just a tad inconvenient for a day or two afterwards... At least that was how it was for me.
Thank you Steve (Sydney) so much for taking time to respond.
I'm thinking it might be achy next day or so, but nothing like a break or fracture.
I'm trying to look at it like it's a phlebotomy, just getting material they need to sort out treatment plan.
I will be delighted to start a treatment plan. I think I'm just at the start of its journey, as My blood results fluctuate but never return to normal and I'm symptomatic. However I know nothing really about how the disease progresses.
So far I know it's not caused by my heart or lungs, I don't smoke, and my tests seem to show primary. But I guess the JAK2 will verify that. Waiting for that to come back.
Thank you again for taking to respond! Hope ur doing well!
You will be fine w/ the BMB. As to what happens next...(?) try to not be too anxious. Obviously you will learn & know more after your results become available... until then... and having an excellent day...
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Main differences in blood tests results for ET and PV diagnosis?
MPNs and bone marrow biopsy
Next Generation DNA sequencing tests
I tested positive for the JAK2 mutation 
