Hey, I’m not yet diagnosed formally with anything but have been suffering with lots of horrible symptoms related to Polycythaemia vera (PV). I’ve had high haemoglobin , red blood cells and haematocrits and my haemotologist was very convinced I have Polycythaemia vera (PV) due to ruling out secondary causes. I’m a 24 year old woman and I’d say otherwise pretty healthy. ( I have endometriosis). My results for Jak 2 / exon 12 mutation have just been sent to me and they’ve come back negative. I know in 95% of cases of Polycythaemia vera (PV) a mutation is normally found. Has anyone else had a similar experience and wondered what was to come next? Bone marrow test or anything like that? Or they’ve ended up finding some other secondary cause for the Polycythemia that hadn’t originally been thought of? All this not knowing what’s going on has been very stressful and I was just wondering if anyone could relate or had any advice 
Hey there @Znliz, a great big welcome to the forum! I’m really sorry to read of your symptoms and anxiety awaiting results. I can empathise with your worries at this difficult time as I was in a similar position last year and ended up being diagnosed with Polycythaemia vera (PV).
I can see you’ve been doing your reading and indeed most of us with MPNs like Polycythaemia vera (PV) will have the JAK2 gene mutation. There are also dozens of other gene mutations of far less frequency than JAK2 that can also indicate something is up with our blood. A new forum member just the other day was saying they’ve tested negative for JAK2 but likely have an Myeloproliferative neoplasms (MPN), so you’re not alone.
From my understanding as a non-medical person, it’s the way our blood cells misbehave that ends up leading to Myeloproliferative neoplasms (MPN) diagnoses. A BMB can check our blood cells at their source (usually in our pelvic bone) and from my understanding is a necessary test to initially check for blood disorders. I had a BMB after a complete blood count found raised levels of platelets and red blood cells. Other symptoms like the ones you describe can also be used as criteria for diagnosing MPNs.
So I’m sorry to say there is a lot of waiting in between tests initially and I’d say try to find ways to relieve any very understandable worry. Maybe try not to read stuff online about MPNs with abandon and stick to places like Blood Cancer UK that share official up to date research: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
For now, while you wait for results, make sure to note all your queries big and small and stuff you’re anxious about so when you get to speak with an expert they can allay fears and explain what might be happening. If you have loved ones you can share this all with then I’d recommend that. A problem shared really can feel halved, as the saying goes.
And something my haematologist told me that gave me some relief and hopefully may help you is that no matter how old we are when diagnosed with these scary disorders, we can live long normalish lives into old age with minimal intervention. I was told I’m more likely to die with Polycythaemia vera (PV) than from it!
Please keep us posted about how it goes, @Znliz!
Hi @Znliz welcome to our forum, and thanks for posting before you have been diagnosed.
It is only natural that you are very anxious and stressed.
Unfortunately there is a lot of waiting around and not knowing and they bring up horrible feelings.
As @Duncan says now is your opportunity to write down all your fears, questions and practicalities for your next appointment when I hope you get some clarity.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Try and divert your mind with nice things, which is easier said than done, and be very kind to yourself.
Thank you so much. Will definitely have to make sure to note down any questions I can think of. Will report back if and when I have more info👍🏼
You’re most welcome! It really sucks that you’re experiencing this, and at such a young age. Better to get clarity now than after a potential clotting event, I reckon.
If you wanted to read more about current Myeloproliferative neoplasms (MPN) research, and Polycythaemia vera (PV) specifically, you might find the notes I took at a fancy blood cancer conference earlier this year useful: Northern California Blood Cancer Conference
I’d say look around the forum too as there are plenty of folks on here who live with these chronic blood cancers and manage to get on with life relatively unscathed. At points where it feels a bit much it’s really helpful to see others thriving despite these diagnoses.
Wishing you well. Don’t hesitate to share how it goes for you, you’re not alone with this @Znliz.
Hello, @Znliz! I am coming late to your post and see that you have already had some reassurance and good advice here. I just wanted to add that I also tested negative for both JAK-2 mutations, to the surprise of everyone involved in my health care and despite having very high haemoglobin and haematocrit levels (which lowered a little, but still stayed too high even after venesections) and most of the clinical symptoms of Polycythaemia vera (PV). I then had a bone marrow aspiration and biopsy and it was those that finally provided a firm diagnosis - from both the bone marrow and the bone sample there was no doubt that it was Polycythaemia vera (PV). Someone has to be in the 3%! So that may be the next step for you on your investigations path. Wishing you all the best!
P.S. I’m not sure why the forum software automatically changes ‘Polycythaemia vera (PV)’ into ‘Polycythaemia vera (Polycythaemia vera (PV))’ - it reads very strangely when it is repeated in full each time!
P.P.S. Oh no, of course it’s done it here! I was trying to say that it auto-changes the abbreviation to the full name, followed by the abbreviation.
Hi @JanetF a great big welcome to our form
Yes, the most common blood cancers are often known by their initials for people ‘in the know’ but I believe there are other people reading or posting on here that would be confused or put off by lots of initials. Personally my little digits and eyes would be worn out typing the actual names and checking the spelling as well !!!
When the technology was first installed I jumped out of my skin !!
Thanks for letting us know about your diagnosis.
I really look forward to hearing more about you.
I think this is the one place that I can say how it really is for me.
Really look after yourself and please do keep posting as you have already helped others on here
Hi, Erica! Thank you for replying. I have been ‘lurking’ in the shadows of the forum for a few weeks now, reading a lot and getting a feel for it. I was only officially diagnosed with Polycythaemia vera (PV) the week before last after a bone marrow aspiration and biopsy, following the two negative JAK-2 mutation tests, but I have been having venesections for almost a year now and since I tick off almost all the clinical symptoms of Polycythaemia vera (PV), my doctors were certain that that is what it was and were so surprised when the JAK-2 tests came back negative.
I have a large number of other health problems and comorbidities, but I retired this time last year from an incredibly stressful job, which has helped enormously. I am living in Kenya (where we have recently been flooded out in the long rainy season), but am preparing to move back to Spain for the rest of my retirement years by the end of this year once I can get my house dry enough to sell it! I have already had cancer once, back in 2012, when I was living and working in Beirut, and there has been no recurrence since then, so I was thinking that all the other health problems that I juggle were all I had to worry about… but now I have Polycythaemia vera (PV) to add to the list.
The hospital here is very good and my consultant used to be a consultant at Guy’s & St. Thomas’s in London and I have every confidence in her, but despite having lived and worked abroad for so long, I still feel a long way from home when things go wrong, so it has been really helpful to find this forum.
Wow @JanetF you are well travelled and I am so sorry to hear that you have been flooded out, I just cannot imagine what that must be like.
Just a quick word of warning as you are living in Kenya and will be moving to Spain, all countries have different ways of treating conditions and different licensed drugs available.
I found it such a relief when I retired although all the free time that I thought I might have got absorbed somewhere.
In retrospect I joined too many things and took on too many commitments but Covid times gave me the opportunity to re assess my life, practice saying ‘NO’ and decide what I wanted to do and with whom.
Hopefully our forum will make you feel nearer to home, take it steady and please do keep posting how it is for you.
Look after yourself
Hi again, Erica! Yes, the flooding here has been terrible - the worst in the 12 years that I have lived here. I have just retired after a long career with the UN; hence much of the travelling!
Thank you for the warning about the possibility of certain drugs not being available in Spain. I already know that my statin, extended release Metformin and a few of my other daily meds aren’t available there, which is a bit of a worry, as I take round about 30 meds a day for various health problems and it has taken a long while to get them all nicely balanced. I hadn’t actually thought about there being differences in the approach to treating conditions, though. In Lebanon, all doctors are either trained in the French or the US system and as a patient you pay your money and take your pick, then people stick with one system and I never came up against anything treatment-wise or medication-wise that wasn’t available. That said, I moved from there to Kenya in 2012 and the situation there has changed considerably since for obvious reasons, but the health system (if you had either money or insurance or both) used to be fantastic. My family and friends were worried about me moving here from a healthcare perspective, but it has been fine and with the UN health insurance (including being medevac-ed to the UK twice over the years) I have never had any problems with finding the treatment or medication that I have needed, although on the one occasion that I have needed to have medication imported on a named-patient basis through the Pharmacy and Poisons Board (which arrived this month), it took ages and cost an absolute arm and a leg compared with what I would have paid for it in Europe. It does seem strange, though, that there are some excellent medications that aren’t available in Spain - why, for example, is extended release Metformin not available there? It’s available in the UK, so it seems very strange.
I have already looked online in Spanish for information about Polycythaemia vera (PV), but haven’t actually looked into the approach to treating it in Spain. More homework to do! So having just found myself the best haematologist in Nairobi (on the recommendation of my neurologist) I shall be faced with trying to find a good replacement in Alicante later this year. I’m very glad to have been able to have all the investigations done here before making the move to Spain, though.
I am still enjoying wandering around the forum and have come across several threads about blood cancer-related songs or music to buoy you up when you have these conditions, so I have put my mind to the task and put together a little list from the music on my phone and I’m going to add it to one of the threads. It’s been really fun to do and my head is full of songs now!
It’s great that you are putting your retirement years to such good use! I think lots of people do as you initially did and take on far too much at the outset, but Covid had unexpected benefits for many people in many ways! The support that you and others offer here is wonderful!
Him @JanetF I also love my music and look forward to you joining the Friday Juke box clubbers.
Each Friday a person chooses 2 words that are either random or usually are apt to that person at the time.
Anyone can choose the words, but obviously not the same person every week.
Then we all come on with our own choices of songs that have a connection to those 2 words.
It’s interesting the variety of songs that we all come up with.
Hi, Erica! I had seen the Friday Juke Box Club thread, but hadn’t had any inspiration for last week’s key words. I’ll keep an eye out every Friday, though - thank you!
P.S. Actually, I had second thoughts about last week’s key words and tried to add a reply to the thread, but got an error message saying that I couldn’t post links. I was trying to post a link to the song I wanted to ‘nominate’ on YouTube. Is there a way around that? How do other people post them?
A great big welcome to forum @JanetF! Sorry that you had a reason to join, but I’m glad you have. So you’re another Polycythaemia vera (PV) survivor without the usual JAK2 gene mutation. Very interesting, I’m glad you’ve found @Znliz.
Ha funny that you mention the blood cancer acronyms changing automatically to their full names. My inner proofreader hates that some of them are in British English and others American English, and some don’t even exist (hey there, MFers!). Other words aren’t allowed because they’re considered identity attacks or pejorative, like ‘qu**r’ that LGBTQ+ folks like myself have reclaimed and use freely in real life. I think swearwords aren’t allowed either, although of course we can talk about bloody cancers with abandon as we live with them! Let’s see if those are allowed 
Hi, Duncan! Thank you for the welcome! Yes, my inner proofreader is very much aligned with yours on these matters! Deeply frustrating!