Not dx yet, seeing hemo next Monday

Hello Scooty,

Yes, many of the symptoms do sound familiar to me. I am now 66 and was diagnosed early in the spring of 2015 after initially having a painful, dingy blue left index finger.

Since then I have realised that many of the symptoms of polycythaemia had been around for years but were so vague and so insignificant that I had just put them down to getting older.

Every one of us who has been diagnosed with polycythaemia experiences different symptoms. Some people say that they get a lot of headaches, I don't (so far). I have had things that have now disappeared but been replaced by other things. 

It is a chimera of a disease.

However, don't panic. It is controllable and if you take care of yourself you should be able to live to a ripe old age.

I get tired a fair bit some days (not all) and I just accept that I am tired and have a lie down, When I don't feel tired I push myself to walk briskly uphill and so on. But I am a believer in ignoring boring stuff and just getting on with life.

Other people will tell you more.

Sorry to hear that you are suffering so.  Your symptoms could well be caused by Polycythemia but this does not necessarily say that you have this disease.  To diagnose this disorder you will need to undergo specific tests by a haematologist and only then would a specific diagnosis be confirmed or refuted.  This is particularly important for the symptoms you itemise could equally well be directed towards other illnesses that have similar characteristics.  The sooner your illness is clarified the better for you.  I would suggest you keep in touch with your medical advisers for now and trust they will provide some worthwhile information for you.  However, this forum can be a wealth of advice for you if PV is the culprit.  I wish you well.

Peter.

Thanks for your reply.  As Angela has already advised you, Polycythemia is a very variable disorder and very rare into the bargain, maybe as you already know.  It is only more recently that a fault with the JAK2 gene was found responsible for the disease and there from birth which is generally accepted.  There may be other causes found but to date none are known.  It is said to be non-hereditary nor transferrable.   There are treatments available which are suited to the individual tests each patient undergoes.  This includes venesections and medication.  The haematologist controls this aspect.  You have certainly suffered but oddly this is not unknown as other PV patients can specify.  There is currently no known cure but the treatments can be very effective.  Research is continuing here.  PV can be difficult to establish due to its rarity and symptomatic variations that can be involved.  I was first diagnosed almost twenty years ago now and subsequently realised that I had been suffering minor symptoms many years before this.  It is a progressive disease but it can be lived with.  Diet and exercise can be quite beneficial, but as you will realise this is not the same with everyone.  If you are not diagnosed with this illness then consider it a big plus.  I hope you can reach a comfortable solution that will ease your difficulties.  It can also be difficult to discover any information about PV which is classed as one of the MPN diseases but both this Patient site includes some useful details about the disorder and other items are available via internet searches.  I include the above in case it might be found useful for you to discover where you stand.  Basically PV is caused by an overproduction of the red cells and this might just indicate the symptoms you describe relating to the abdomen pain in the area of the spleen.

I would point out that I am not a medical professional, just someone long suffering from this disorder whom has learned much about its credentials.   Best wishes.

Peter.