Hi . I have just joined the group after being diagnosed with PV .
Posted , 4 users are following.
When my specialist diagnosed PV about 2 years ago , at the time I probably didn't appreciate how serious this can be . My local GP who i have realised also doesn't seem to fully understand the seriousness of PV as at my last blood test 8 weeks ago said everything was going fine , but it wasn't. My annual appointment with my specialist this week had pointed out how my results showed that it was out of control . It gave me a scare when he explained the risks in detail but assured me if it's managed carefully I should lead as close to a normal life as possible. My message is , is monitor it closely and deal with medical professionals who totally understand this condition.
When I asked my specialist about possible causes for PV I was surprised when he told me that research had shown clusters of people who had lived around or nearby nuclear power plants around the world had been diagnosed with PV. As a young child a lived in the north east of England,not far from Sellafield nuclear plant. I have not yet seen any discussion about this yet on any forums so any further info on this fact would be interesting.
1 like, 5 replies
PO32_6AP gaza_1961
Posted
Hi I was surprised what the consultant says about how PV occurs, I have Mediterranean blood and was told this can cause it ! Fortunately I had brilliant results from my consultant the other day all my blood counts were normal hooray! I've lost weight, only have steak once a month and a glass of wine about once a month. Cut down on broccoli and iron making vegetables it seems to have worked long may it last good luck everyone !
gaza_1961 PO32_6AP
Posted
peter98873 gaza_1961
Posted
Your experience with the GP is not unusual. These doctors only rarely are presented with a patient who is diagnosed with PV. Some GP,s may never encounter the disease and those that do generally, in UK, refer the patient to the local hospital haematologist unit. Haematologists are the acknowledged blood experts who specialise in any disease concerning the blood. Your doctor is quite correct to say that PV, if carefully managed, can be controlled. The manner in which it is controlled is after you have visited the Haematologist. There are different treatments available but it should be mentioned that your tests with the blood specialist will be the source from which your treatment is provided. People are different and any diagnosis and treatment proffered will be solely for you. You will be required to attend the haematology clinic regularly for continued treatment. There is currently no cure available for MPN diseases of which PV is one of several in this group. However, the current treatments can be very effective. Your haematologist should discuss the issue with you. As for the cause of this, PV has been diagnosed about 10 years ago as being caused by a defective gene at birth. It is not thought to be inherited and there is a suggestion that there can be other causes too, but these have so far not been confirmed. There is plenty of infomation available on various web-sites, including this one you are on now, that are most informative on PV and other disorders. Just have a search around. PV is a very rare disorder which you will find is generally liitle known about except by the specialists. I have suffered PV for many years now and still live a good life but do look after yourself. Eat sensibly and stay active. Radio-active causes of PV are not recognised as a major issue as it can be with certain cancers. There is plenty of advice on this forum from patients who suffer from PV, who can usually expand on their own experiences and treatments. It is a complicated disorder so be a little patient with your medics who should guide you through the intricasies of this unwelcome disease. I wish you well for the fuiture.
Peter.
gaza_1961 peter98873
Posted
Hi Peter . Thanks for your reply . I will follow your advise as I am still getting my head around this whole thing , it's surprising how rare this disease seems to be but I am encouraged by people like yourself that are going through the same thing but are positive about the outcome. Thank you again and wish you well.
peter98873 gaza_1961
Posted
Hello Gaza,
The rarity of PV is said to 2 in 100,000 people. There is a fair chance you may never meet another patient with this disorder. Most sufferers seem to communicate via a forum, such as this. Most people have never heard of PV or any of the other MPN's and you will often find you need to explain a few things to family and friends, who just do not understand these disorders. Just take things gently, try not to be too concerned, and most importantly keep in touch with your haematologist particulrly if you need to know something that concerns you about your illness. Best wishes for the future.
Peter.