went for annual health check up in april.my rbc,hb and hct levels were high and just had jak2 test which came out negative,now waiting for exon12 report .4yrs back my blood levels were fine.i don't understand how could they go up so suddenly.i have sinus problem too.could it cause polycythemia??till last month I had no symptoms.now veins of my palms get visible sometimes and disappear on their ow.iam so confused what to do next.thinking of asking the doc to look into secondary reasons.and btw iam 24 yrs old.
My name is Steve. Sounds like you are a tad concerned with your test results, and of course I can understand that results can sometimes be overwhelming, however, possibly best to wait to hear what your medical team has to say about your latest tests before becoming too worried...
It is annoying to be sitting waiting impatiently for answers in a kind of limbo... but better to do that than to start creating apprehensions that might as yet prove unfounded...
We are all so uniquely different, and usually, there are so many variables in play with is all.
As tough as it is to do so... just try to be patient with yourself until you have more information...
... and in the mean time, there are many people here that you can chat with whenever you need to. I am sure that there are also a few here who might be close to your age too...
Hi. Not surprised you are feeling a little concerned about your blood results! But it’s great that you benefitted from an annual check up which picked up the high counts. Many of us only find out about our MPNs through unrelated random blood checks so your situation is really not unusual. And four years is quite a long time. The best thing you can do is to keep a conversation going with your doctor or heam team. Ask your questions, express your concerns to them. They can give you answers that will allay your fears or confirm a diagnosis and get you on a treatment plan. The sinus situation is probably quite co-incidental but if it’s bothering you then get it checked out. You may need decongestants or perhaps antibiotics if you have an infection. As for the veins on the palms of your hands if it’s hot where you are then maybe the heat is causing them to become visible. It may take a little while to get a full picture. And you might not know the answers to everything. Meanwhile you’re young and if you you have no other major health issues then that is all good. Let us know how you get on.
I think I would wait a couple of months then repeat the blood tests and if still high I would try to see a hematologist for their opinion. You are much younger than most mpn'ers.
I am already seeing a hematologist and she recommended jak2 reflux test.but it came out neg.keeping a chk on my hb every month and it is increasing.so I am pretty sure of polycythemia.,primary or secondary I need to figure that out and begin treatment soon.lately I am having little trouble in speaking.its not that much of a trouble to affect daily Lyf but I can feel some stiffness in my throat.waiting for exon12 report then I'll go and see my hematologist.
Hi, please try not to worry so much about your results until you have the full picture. It is very scary to begin with and we’ve all been on the merry go round of tests and results. Even if you do have Polycythaemia, the life expectancy, providing you are monitored and treated as necessary is normal. There are a lot of people on this forum who have had their disease for a long time and are still very much alive and kicking.
I have Polycythaemia but find my osteoarthritis gives me more trouble than it. I’m also Jak 2 negative. Have a look at the MPN Voice website which gives you trustworthy information on Polycythaemia and other MPNs. Please keep in touch with this forum as you will find there is always someone there to support you and help you through these scary and anxious times.
Hi, yes secondary reasons were ruled out by CT scan and too many red blood cells confirmed by a red cell mass study in nuclear medicine dept. Please don’t be alarmed by all these tests, etc. I was told being negative to Jak2 probably meant I was positive to a different mutation but in the end the treatment would be the same regardless.
I know it seems overwhelming at the moment but you will get to grips with this. Some people have very few symptoms and as I said already there are a lot of us alive and kicking still who have had Polycythaemia for years.
I find that arming myself with knowledge so I understand what’s going on reduces my anxiety. I have also learned I can worry myself sick about results but it will make no difference to what they are and it usually means I’ve just wasted both time and energy worrying for nothing. Take each step at a time, insist on answers from your medics. It’s your body, your illness and you have a right to know. I always write down my questions/worries so I get my answers and don’t forget to ask!
Above all, remember this forum is here to support you. Kindest regards Aime xx😺😺
Thank you so much for detailed explanation.....I feel like I'm trapped and there is no way out of this thing....my body is also showing symptoms slowly and.... I don't know how this happened so suddenly....
Hi you will feel trapped to begin with until you get more results and gain more knowledge. Then you will start feeling you are gaining some control over your life and mind again. Keep in touch Aime.x😸
One more thing I wanted to ask aime.when did u get to know about your pv??and my palm turn all purple and it's like each and every nerve is visible and they disappear too on its own....does it happen to you??
Hi, I do get burning and redness in hands and feet. Do you mean your veins or nerves are visible? There may be someone else who has the same problem.
It was probably about 6 months before I got a firm diagnosis. Up until then my symptoms were getting blamed on depression due to elderly parents being ill, but I knew the fatigue, in particular was not normal.
It is like being on a merry go round you can’t get off of and such an overwhelming and anxious time so I do understand. You will get through it but it’s trying not to worry yourself sick about things which may never happen.
Apologies I meant to add when my blood is too thick I have problems speaking, remembering, etc . Once I have blood removed, I find the brain fog lifts and my mind feels sharper, my concentration better and I know there are lots of people on this forum who suffer similar symptoms. You must discuss your worries with your medics. Insist on tests and answers otherwise worrying will make you ill.
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Confused
Results not so good
and it was all going so well...........
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