Newbie

[RoundTheWorld]

Just saying hello. I’ve been lurking since testing Jak2 positive (blood test) a few weeks ago and grateful for the information I’ve found here. It’s all very new and I don’t know whether I have PV or ET.

[Mostew]

Welcome. You have found a great place to let off steam . Ask questions and generally find some comfort at a time of feeling bewildered and unsure (* if you are anything like I was !!)When you have an appointment with consultant to discuss diagnosis ?

And how are you feeling ?

[RoundTheWorld in reply to Mostew]

Thanks Mostew. I’ve been seen by local haematology but they are reaching out to an Mpn specialist as I have complications specific to my situation. I’ve been a bit wobbly but it explains a lot from the last few years.

[hunter5582]

Hello and welcome.

It can be tricky to sort ET from PV. It sometimes requires a BMB to look at marrow morphology. Sometimes the diagnosis can be made from blood tests alone. I am wondering which of these you are experiencing - thrombocytosis, erythrocytosis, leukocytosis.

PV is distinguished by erythrocytosis. This may be accompanied by thrombocytosis and/or leukocytosis. There are times when a Masked PV is present. this looks like ET on the surface but in fact is PV. That is a trickier diagnosis. JAK2 is found in 95% of people with PV and 50% of people with ET, so it does not distinguish the PV or ET diagnosis.

hope you find answers soon.

[RoundTheWorld in reply to hunter5582]

Thanks hunter5582. Masked PV has been mentioned as a possibility. Several years of thrombocytosis (+ raised haematocrit) but not very high and attributed to iron deficiency (non anaemia - hb was always top end of range). Various doctors have tried to help and run lots of tests over the years but other factors made it difficult to see that varied symptoms were related.

Amidst the stress of finding out the jak2 result it was a relief to read the symptoms on Mpn voice and at last have an explanation for why the last years have been so challenging even when I’ve looked well on the outside. It feels strange to share health details with strangers but I’m v grateful to find people who know what it all means.

[hunter5582 in reply to RoundTheWorld]

What you are describing is consistent with a PV diagnosis, but you need that confirmed through a proper assessment. One thing to know is that PV can be viewed as an iron dysregulation disorder. It is quite common for people with PV to be low on iron but not anemic. The KISS explanation of that our body is using up all the iron to make too many RBCs since the JAK2 mutation makes the "on-switch" always on. Here are a couple of articles on this topic.

nature.com/articles/s41375-...

tandfonline.com/doi/full/10....

Finding relief in knowing "why" is a common experience for many of us. The JAK2 mutation does much more than make the body produce too many blood cells. It is a relief to understand why things are happening and to feel understood and validated.

Wishing you all the best.

[RoundTheWorld in reply to hunter5582]

Thanks for the links Hunter. Very interesting reading. A lot is still over my head but the bits I understand fit well with my experience.

I looked back and progression has been from iron deficiency (non anaemia) most of the time since autumn 2016 - thought then to be due to heavy periods (fibroids). Thrombocytosis (platelets) from Spring 2017. Erythrocytosis (raised RBCs in about 50% of the blood tests but haematocrit high throughout until iron infusion ) from early 2019. Hb high normal throughout and none of my raised blood levels have been dramatic, although I was symptomatic in many ways which I now read are typical. Interestingly after iron infusion late last year RBCs and haematocrit temporarily dropped to normal levels.

Sorry if I’m over sharing!

You mentioned the KISS explanation - what’s the acronym please?

[hunter5582 in reply to RoundTheWorld]

KISS = Keep It Simple Stupid. Sometimes simple explanations are easier to process. Iron metabolism and hematopoiesis are both complex processes. A deeper understanding requires building a base of knowledge for those of us who are not already medical professionals.

Understanding of the key processes involved in the MPNs is very useful; however, most of us do not start out with understanding these processes. If you are interested in a deeper dive, these webinars are a good place to start.

youtube.com/watch?v=ahCy97F...(Not working as expected?)

youtube.com/watch?v=kcnOXlr...(Not working as expected?)

youtube.com/watch?v=aIQ9Ex_...(Not working as expected?)

[RoundTheWorld in reply to hunter5582]

Thank you!

[william-Indo]

Welcome to the group

Do BMB to ensure your diagnose and get right treatment.

Just enjoy your life and no need to worry to much, there's a lot of the treatments available to make you live like normal.

Cheers

[JustKeepSw1mming]

Welcome, RoundTheWorld!

It can be very overwhelming, especially when you are just diagnosed.

But as you have probably already seen, there are some trully inspirational people here that enjoy their lives to the full.

It is a great group for information and for support

Take care and hope you get some clarity soon.

[Oscarsboy]

Welcome. You have found a great place to be. Lots of reassurance , knowledge and help here. It's so reassuring to know that an MPN specialist is being sort out for you. Hopefully you will have some clear clarification soon.

[RoundTheWorld]

Thanks everyone. You’re a lovely lot!

[Tattycoram]

Hi RoundTheWorld. You're not alone! I'm also busy 'coming to terms' with a recent Jak2 diagnosis. Hope you soon get the information you need, and that things go well for you.

[RoundTheWorld in reply to Tattycoram]

Hello and thank you!

[Mazcd Partner MPNVoice]

hello and welcome to our forum. It can be very daunting when you are newly diagnosed, especially when you are waiting for a definitive diagnosis for which MPN you have. I hope that the information on our website is helping you to understand more about MPNs, the medications used to treat them and ways to manage symptoms etc, mpnvoice.org.uk

We also have lots of very useful vlogcasts - a series of informal chats with MPN patients and healthcare professionals - and videos of our virtual forums on our YouTube channel which may also help you youtube.com/channel/UC-S_Ic...

We are all here to help and support you, best wishes, Maz

[RoundTheWorld in reply to Mazcd]

Thanks Maz. It has all been very useful and I’m v grateful it has all been put together.

[RedCardRob]

I also found this forum informative and reassuring because the initial stages of diagnosis is confusing as to what happens next and also the time it takes.If you haven't already, next time you see anyone make sure you try and get a contact number for your designated specialist nurse or team.

Hope you get sorted for your treatment soon.

[KLCTJC]

just want to say welcome! Everyone here is here to help and be supportive 😊

[Jamesxyz]

Jak2 ET or PV treatment is pretty much the same.

[Spanelmad]

Welcome to the gang