Jak2 negative

[Sarahserena81]

Hello I am a normal healthy 38 year old. Well I was until I was told I may have PV. I am Jak2 negative. Everything I read on google scholar tells me my epo level at 8 it still doesn't clear me of PV. Rbc is 5.62 HB 165 and get is 47. It has been increasing for over three years. I am very asymptomatic. I have no secondary causes in my opinion. Next Apt is March. Anyone else confused?

[Applesnpears]

What has your doctor said? Your latest set of results are marginal so it might be a case of more data required.

Are you keeping well hydrated? Not having drinks before your blood is taken ( no time, long waits etc) can push up your numbers.

[Sarahserena81 in reply to Applesnpears]

I don't know what the doctor will say until March 9th I drink almost a gallon of water a day. 😊 I have been on a life change since 6 years ago. I have lost 140 lbs and was starting to feel amazing and then bam. I started feeling blah. I don't smoke cigarettes and try to stay healthy.

[Applesnpears in reply to Sarahserena81]

Losing 140 lbs is amazing - that equivalent to a whole person!!!

I've already said that it is important to stay hydrated but a gallon of water a day is too much, particularly if you are having other fluids on top.. You can lose a lot of essential salts including sodium and that can cause serious health problems. That amount of fluid intake might also make it tricky to interpret your other blood counts.

Mention your weight loss and fluid intake to your doctor. It might help explain why you are feeling "blah".

[Sarahserena81 in reply to Applesnpears]

No it sure can. I am so thirsty all the time! I am not diabetic. Just this erythrocytosis got me feeling bad because of symptoms. I am in healthcare as well. Sometimes we don't take care of ourselves until we are to sick. Doctor knows about my weight loss already. All of my electrolytes are balanced as I eat very healthy as well. Just unsure why I am sick. I thought I was doing so well!

[Aime in reply to Sarahserena81]

Hi, welcome to this forum. If you go to mpnvoice website, you will get trustworthy information there as like this forum everything is monitored.

There is a lot of confusion over the terms polycythemia and Polycythemia vera and erythrocytosis. Polycythemia just means too many red blood cells, erthrocytosis is the same but Polycythemia vera is the MPN.

I’m Jak 2 and exon negative also and I’ve been rediagnosed with idiopathic erythrocytosis. Both the symptoms and treatment are the same as for Polycythemia vera. I do wonder in years to come if another mutation will be discovered which is also responsible for PV in the people who are negative to the current mutations.

It sounds like you are doing very well with your diet and fluids but do your reading on website as suggested above. Hope this helps, kindest regards Aime x😻

[Sarahserena81 in reply to Aime]

That is what I was wondering myself. If maybe I have a mutation they havent found. What level was your epo? I always wonder about mine. I would love to compare and contrast if you ever have time

[Aime in reply to Sarahserena81]

My EPO was normal, cant remember exactly the number. This forum is great for support as you are finding out! Kindest regards Aime x😻

[Rachelthepotter]

Hi. When I was diagnosed with MF three years ago, after a 2 month period over Christmas when I was in limbo as to whether I had ET or MF , a main emotion was relief - at least there’s a reason for the tiredness and general grotty feeling.

What you’ll find is that seeing an expert on MPNs helps a lot. The Mayo Clinic website has up to date info on MPNs and does Wikipedia.

As to drinking loads of water, I’ve found that checking the colour of my urine occasionally against a standard pee chart works better than drinking any fixed amount of water. If its a nice very pale yellow , thats fine.

Well done for loosing all that weight. That isn't easy. Do keep posting here - I’ve found a lot of good sense and kindness that has helped.

[Sarahserena81 in reply to Rachelthepotter]

Thank you so much. This is so amazing. I was hoping to find somewhere to ask questions. I don't know what happened, I replied to your comment earlier and it must not have saved I have been all over the Mayo Clinic! I also use other reputable treatment facilities. From what I understand right now BSCH is the most accurate at diagnosing this kind of disorder. I love that you all are so willing to help and comment here. I am in healthcare myself. I am equally good at knowing my body. That is something I take pride in. My urine is a pale yellow as well.