More tests

Hello everyone,

I am now to have red cell mass and plasma volume testing on Tuesday to try to conclude the dx.

I don't know why yet. I'm surmising either the JAK2 was neg or some rs were + and others were - making it difficult.

Anyone had this before?

I drink a lot of water should I cut back?

Everything is still elevated, Hb hemocrit and red cells.

No autoimmune diseases though.

And to top it all I have sudden onset calf pain on walking, hoping it's only from being on my exercise bike for 25 mins although never had it before.

Thank you for any thoughts you might have!!


15 Replies

  • Yep I’ve had a nuclear scan - last year to confirm the rediagnosis from ET to PV. It was pretty straightforward with quite a lot of needle activity and hanging around! As mine wasn’t carried out by the regular haem team my only advice is - just ensure that they know you can bleed! At the end of my session I redecorated the corridors! Be prepared for a longish wait between the two sections of the proceedure - fortunately I was up at Guy’s so diverted by a walk along the river and The Tate! Don’t recall any advice about drinking or not drinking. Probably good to keep hydrated and fed throughout. Good luck!

  • Thank you Ebot!! I'm having mine done at imperial on Tuesday. I will just keep drinking as much as I do usually. I'm always thirsty anyway so it's great I can keep drinking.

    Thank you!!! Hopefully this will sort it all out and move it forward. Ah the Westfield mall is close I must see if there's anything else close by I could visit! Museums and the like are my fave!!! Will make some positive use of the time when I go! :-)

  • Hi Jen, I had a red cell mass test at the nuclear medicine department at Guy's Hospital. It was to determine if I had PV (rather than ET) and done as an alternative to a more invasive BMB. In my case, it was very much worth doing and it confirmed PV. They take blood out, radiate it, and put back in. The whole process takes a few hours and you have to wait in between the various parts of the procedure. I had lunch in one of the longer waits. Do drink a lot of water, I did it in the Summer, had not drank much and started to feel faint with the heat and all the blood work activity... Good luck! Susana x

  • Awww sounds like it was the better alternative for you! Horrible to feel faint though!!!

    It's all very complicated isn't it! Who knew it would be, I certainly didn't. Hopefully this will put it to rest and go forward. It will be nice not to feel so rough and have sore heels when I walk on them or joint pain. I will make good use of the time I'm waiting about and do something positive whilst there! :-)

    Hope ur doing ok!

  • Yes, it is important to have the correct diagnosis. I started Pegasys interferon soon after the PV diagnosis and two years later my bloods are all normal. Hoping for good outcomes for you too! Susana x

  • Hi Susanna

    Lucky you - I got a (second) BMB and the nuclear scan ☹️. As I recall the whole thing was carried out in what appeared to be a cupboard! And a warm one at that. Hey ho.

  • Oh dear, having both procedures seems excessive if the purpose was - like in my case - to determine if we had ET or PV. And yes, it was done in a tiny hot room at Guy's!!! Hope you are doing well now. Susana x

  • Bummed out just had yet another spontaneous rupture on the tip of my finger. They get really itchy hot and then painful then burst.

  • It was a kind of evolving process! I go along with whatever the Prof suggests. I appear to be alive and kicking - and hope you are too! Trying to keep off the meds for as long as possible. Xx

  • Yes I agree to stay off meds until necessary!!! I get it now this problem with MPNs are an evolutionary type disease and it develops as it wants to.

  • Hi Jenny I was wondering how you were - good luck with your tests the sooner they do them the better - had not heard of the nuclear scan here I've thrombocytosis Jac +-- so can't give you any advise re that - what about your calf pain?

    I do hope all goes well. Brid12

  • Hello there!!!! Thank you for being in touch!!

    I'm JAK2 - and normal epo but raised everything else with spontaneous ruptures. Newest one today. Calf pain is still there no redness though. My feet are killing me and that's without high heels! Lolololol old lady now with the flatties and trainers Lololololol

    Yeah hoping this test will prove something at least!! Hopefully good! :-)

    Thank you so much for touching base!!! :-)

    Hope you are doing ok!


  • I'm doing fine thanks Jenny. Getting cooler here in Cyprus. Great for walking now . I haven't worn heels for yrs think I'd topple over if I did.

    My hands and feet seem to be permanently 'tingling' the Femara which I'm on for Breast Cancer doesn't help. I have to learn to live with it.

    Again good luck on Tues. Bx

  • Take good care!!!! Xxxxx

  • Good luck for a Tuesday Jenny. 👍

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