Update 3

[Winterella]

After 2 inconclusive jak2 tests, i got the third one today that said a mutation has been detected in low percentage of the cells.

So now i am waiting for my fourth jak2 test but i probably am positive with normal high plt... kind of scared about the meaning of all this

[Ebot]

Sounds like you are in a pretty good position as far as these things go. Your platelets are minimally raised. Anything under 400 / 450 is generally regarded as normal.

To put into context in the first months leading up to my diagnosis my platelets climbed by 200 / 300 and eventually plateaued for a long while around 1100. When I was eventually put on Hydroxy, my platelets had climbed - over many years - to 1700. After some months of treatment they fell to the 600s. At that point I was regarded as stable. So from the numbers you have posted you really are OK.

Added to which you are young, you have no symptoms and you are being well managed. I understand this has been, and is, a confusing and unsettling time for you. But there is a lot to be very optimistic about. From an MPN stand point you have your whole life ahead of you.

Wishing you well.

[hunter5582]

The test should be rather specific. What is your JAK2 mutant allele burden? This should show as a %. Did they ever check for CALR and MPL? These mutations are NOT mutually exclusive; however, it would be very unlikely to have both.

I totally get that the uncertainty is bothersome. My suggestion would be to adopt an operating assumption upon which to base your decisions. Maintain that theory until proven otherwise. Something like "I seem to have a very low level of the JAK2 mutation present making it very difficult to detect. I am almost completely asymptomatic and my risks are very low. I can live a high quality life and would expect to live a normal lifespan. I will take precautions to protect myself and monitor the condition. "

Given everything you have described, it sounds like that is a reasonable theory. Some of us have relatively indolent versions of a MPN. I am thinking that may be the case for you. After 30+ years of managing a MPN (and a few other interesting items) I have found that worrying about it does no good. Control what you can control and manage the symptoms you need to deal with. It is really important to pay more attention to your overall health. Good nutrition, cardiovascular condition, hydration, limiting exposure to toxins - all more important when there is something like a MPN going on.

Still, I hope you do get the more definitive answers you are looking for. Meanwhile, all the best to you,

[Winterella in reply to hunter5582]

The only thing it said: mutation has been detected in low percentage of cells.

2 years ago it said: there is a suspicion of jak2, please repeat in 3-4 months.

I can’t believe the same year i decided to actually look for the cause is the same year (i presume) my jak2 started to rise a little.

I am kind of bummed because i am young (36) and didn’t expect to get something like this so young, feels like my body betrayed me since i was always very healthy...

And i don’t even know the reason, it’s not like i spent time near a nuclear reactor...

And now since my plt is lower than the mpn threshold i don’t even qualify for the disease and literature doesn’t know how to manage someone jak2 positive with no mpn diagnosis. Great.

[hunter5582 in reply to Winterella]

I was in my early 30s when the MPN was diagnosed. This was before the JAK2 mutation was identified. It was not until much later that I even found out I had that mutation.

It sounds like you have already seen that there are a certain percentage of the population who test positive for the JAK2 mutation but are asymptomatic. It may well be that you are one of the people who just sits on the threshold. I do think that is better than definitely having a MPN and the symptoms that go with it. The uncertainty really sucks though.

Sometime things happen for no reason and it sucks. Sometimes we just have to "Embrace the Suck" or alternatively "Suck It Up Buttercup." I have morale patches that say both of those things I put on my gear just to remind myself. I have had a few recent incidents of suckiness to embrace of late. It really does help to adopt a certain attitude in dealing with it.

Still - I do hope you get the more definitive answers you are looking for. No matter that, there are always plenty of us here in the forum who get it and will be here when you need to reach out. Please do let us know how you get along and what you learn along the way. We are stronger together.

[Winterella in reply to hunter5582]

Thanks for the kind and encouraging words, i guess i’m still in the “realization” process.

Still waiting for the other blood tests i did for clotting factors, only homocystein so far came back normal. And then ill have a chat with my dr...meh

[Timjonze]

It sounds like your MPN, if that’s what it is, is hopefully progressing slowly. Being diagnosed is a scary and confusing time - especially at your stage when all is not yet clear. I was diagnosed aged 38, two years ago, and was also shocked as I assumed I was in perfect health. My platelets at last check were 492 and I’m only on aspirin (however I do have a very large spleen at 22cm - maybe they can check yours as this is sometimes where the excess blood produced ends up instead of your bloodstream). I was terrified when I first found out about this but now it’s something I only think about occasionally. Treatment options are progressing rapidly these days. Good luck with everything.