I have just been diagnosed with PV but Jak2 neg

Repeated blood tests over months, low epo and family history. Have started venosection and have to have a bone marrow biopsy. I got so dizzy I couldnt stand and ended up in hospital with extremely high blood pressure.

That's really interesting that you mention dizziness, I too have had times that I cannot stand up due to dizziness, feeling like I'm going to be sick too. My grandfather died at 44 with a massive blood clot too, I'm waiting for my exon 12, no secondary issue has been found too I've had no BMB but my EPO is normal at 8, however I have been told that 14 is average but mine not considered the classic low side for primary. Next time I get so dizzy I'm off to hospital I might get something rolling then. If you don't mind me asking is it just your red cells? And what levels are they when they when u were really dizzy? Xx

My haemoglobin and haematocrit were both above the normal levels. My sister had a stroke at age 30 and blood clots in her lungs. I also had terrible headaches and nausea for two weeks when my dizziness was at its worst. Still feel really sick at times. My fingers sometimes go numb at the tips and blue too. See a good haematologist. It was my local gp who sent me off to hospital in an ambulance and also told me to buy a blood pressure monitor for home. As soon as they put me on blood pressure medication by blood pressure dropped massively though to like 68 /40 so had to be taken off even though it was a low dose. Its a frustrating process. X

Hi Julia...

I am not sure who told you that 14 is average for EPO, but that is incorrect... For most people, it ranges, but 6-8 is quite normal... 

Kevin I thought that too, but it was a lady that said who's on another forum her epo is 7 she said hers is low, I said I got told under 3 is low, 7 is normal as is mine at 8, however she insisted, I thought what do I know? I was told that epo can range dramatically though. Kevin I've taken the plunge and I'm leaving my heamotologist, my exon 12 was back last week, I don't know the result, however my gut feeling is that's it's okay, if he's tried to phone I've been out, I'm looking around to see another one, I have a family friend who's a doctor, she's very high up too, I was talking to her on Saturday and she was disgusted that my heamotologist has firstly sent me back to my GP because I'm dizzy, she said with my blood levels it could indicate a mini stroke along with the headaches and now I've blurred vision, she got my husband to one side and told him how serious this is for me and it's disgusting that I'm no closer to a diagnosis after 4 months of seeing him, I have to stress too that this is all private, she thinks he isn't knowledgeable enough on polycythemia and I need someone who is, she also said with your symptoms I should at least be told to take aspirin! So back to the drawing board. X

Hey Julia.... I know its a frustrating journey; I haven't even seen a hematologist yet, although I have a confirmed date, its just not until next June lol... I am actually seeing a whole team of Dr's, but the fact that I have to wait until next June tells me that they're NOT too concerned, it least thats what I am hoping for lol... 

I believe that lady is quite wrong... I would attach a link on here showing you she's wrong, but the last time I did that, the monitors on here took awhile to post it, which is understandable. The article, which was quite recent, is based on a medical study that looked at over 6000 healthy adults, both male and female, to gage EPO levels, and trust when I tell you this, levels ranging from 4.8 to 9, were considered the median, or average, for both sex'... 

I pretty sure you would have heard if your Exon 12 was positive, and everything I have read, which includes a fair amount from many experts in the field, is that if both your Jak2 mutation tests are negative, EPO is normal, and the only count that is high is your red blood cells, its secondary in nature; but then again I am not a Dr... 

Just Google the title of this article (below)... the study is from 2015, so faily recent... I try not to worry when I read such stuff, and do take what most people say on online discussion boards, with a grain of salt... But, that is not to say I might not be wrong, including with myself...

"Erythropoietin in the General Population: Reference Ranges and Clinical, Biochemical and Genetic Correlates."

Hi Kevin read my latest post as I've had a update since this one, my exon is negitive, I did think it would be, would appreciate your comment on my latest post. What are your levels is it just your red blood cells? Xx

Also, I wanted to ask if this lady have PV? I'll also add, that some people with PV do have a normal EPO level, but the vast majority do not, something like 85-90% do not... Somehtings that can effect your EPO level is blood letting, which can raise it from what I understand... that is why most Dr's like to get an EPO level before they start blood letting on a patient, giving them a more accurate count. I also read, from an expert in PV, that virtually all PV patients with an Exon 12 mutation have sub-normal levels, that is why most Dr's will not even check for an Exon 12 mutation if your Jak2 V617f is negative and your EPO is normal. But I guess if you insist, like I did, they'll check lol...  

I can't find you post lol....

 

It's saying that my results are back look at the top x

I found it... lol..

'able'

Same!!! I wasn't even sure if that was related!

Its horrible...I am constantly in agony and never seem to feel well.

How were you diagnosed Scotslassie? I'm just trying to get to a diagnosis but it's going on and on, I first saw a Heamotologist in July, one minute I'm secondary as I'm JAK 2 negitive then all secondary issues were ruled out with a CT scan and I'm now primary again maybe, had a JAK exon 12 done, it's back but my Heamotologist keeps ringing when I'm out and no number to ring him, but then my EPO is normal at 8 what's your EPO? but my heamoglobin has risen again it's now at 174, my heamocrit it's at 0.53 and red blood cells at 5.66, this was 6 weeks ago and I'm thinking it's probably risen again by the way I feel, it's so frustrating are you from the UK?

Hi Julia,

The Haematologist diagnosed me with pvr jak 2 neg.

I saw him last week and he is happy with my bloods.

I havent had a venesection for over 14 months now.

You are good to remember all your numbers.

I only see mine on the pc screen at the Haematologists office.