I was diagnosed 2 years ago with PV As I am rather sma...

Hi,

Just been browsing for prv support groups on line and spotted your message. My partner has been suffering from prv for 8 years now and has not found anyone in England with the same illness that may wish to discuss the illness/treatment/side effects and the things that none suffers may not understand. I try to be supportive, but unless you have been through a similar illness no-one can actually understand the emotions you are going through. If you would like to chat, or compare notes with him, please e-mail me and I will give him your contact details.

Good luck

Paula

[i:eafc381f31]This message was automatically imported from the original Patient Experience[/i:eafc381f31]

Hi, im a male of 38yrs, and was born with PV, but i was`nt told until i was in my 20s. i go 2 hospital weekly or monthly, all depends on count levels. Treatment is a unit of blood (taken). My local gp says \" there is know such thing as pv, and its all in my mind\", hence i can`t get anything for pain etc. At the end of the day, a truthful doctor will tell you PV and it is a cancer of the bone marrow / blood. They don`t know what causes it and they DON`t know how too treat it, (it`s all guess work). At the end of the day, you can have a very long life. I`l be more than happy too speak too your husband. Sorry about the spelling thats one of the MANY side effects. :D

[quote:f1e9f4d5ee=\"Brian\"]Hi, im a male of 38yrs, and was born with PV, but i was`nt told until i was in my 20s. i go 2 hospital weekly or monthly, all depends on count levels. Treatment is a unit of blood (taken). My local gp says \" there is know such thing as pv, and its all in my mind\", hence i can`t get anything for pain etc. At the end of the day, a truthful doctor will tell you PV and it is a cancer of the bone marrow / blood. They don`t know what causes it and they DON`t know how too treat it, (it`s all guess work). At the end of the day, you can have a very long life. I`l be more than happy too speak too your husband. Sorry about the spelling thats one of the MANY side effects. :D[/quote:f1e9f4d5ee]

Hi its Brian again. I 4 got 2 leave a forward address. You can get hold of on... ****

I`m no doctor, but 38yrs of pv does give me a insight into this illness...

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hi to you all. i was diagnosed with prv sept 07, av had 7 venisections,now been put on hydrox 500mg,my platelets were 800 but have now gone down to 685 been taking hydrox for 3 weeks. still feeling very tired i have no energy at all,my fingers toes and feet are very painful its a burning pain.does anybody know of a good site that explains prv look foward to your reply