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Just been diagnosed at 35!

Posted , 3 users are following.

Guest
Guest

What shocks me is that I have had abnormal red blood count for at least 3 years and no GP ever did anything, in fact even now I had to force them to refer me to a Haematologist, otherwise I was going to go private. I am just wondering how many people have had health problems that GP's ignored, I was made to feel like it was all in my head. I suffer really bad with migraines which got worse and worse (3 last week) and although they say might not cure it sure must have made them worse.. along with a whole list of complaints (too many to bore everyone with) and extreme tiredness! Anyway just waiting for JAK2 tests I believe and my levels are currently 61 so now got another appointment to have the bone marrow tests, has anyone had this, they sound painful... just wondered? There is a bit of information on the web but amazing how confusing it is, like someone said is it blood cancer or pre-cancer blood disease! I also want to start a family as I am getting on a bit!

Be nice to share information with people as this is a rare blood disorder (I hate the word disease!)

Thanks!

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    hi there i am 38 and newly diagnosed PRV, i was suffewring with extreme headaches leading to migranes at least 4 in one week, i also sweated perfusely and my skin was red in colour. i did not feel well at all. I went to my doctors and he got me to get a blood sample taken and it showed i had a RBC count of 19.1 and my haematocrit 65%. Initially i thought i was going through the menopause, early. So it was a shock to be called into the hospital the day after i gave my blood sample at my GP practice. Over 9 days, 4 visits and 4 pints of blood were vevesectioned off me, i felt very tired and was signed off work for 5 weeks. My symptoms have subsided and it has been 4 weeks now that i have not had any blood taken. I am getting to grips with having the condition, but you need support around you, which i have. My GP and heamatology department have been very supportive.
  • annashadow
    annashadow

    Posted

    Hi how good it feels to someone had similar experience to me, I also have fybromyalgia so they kept putting it down to that.I have red bruising all over me,heads,dreadfull pain in legs/arms back etc red face and the list goes on.The worst though is the lethargy,at the moment can hardly walk one room to the other,am so depressed cant take my Bichon Frise for walks,my life seems to have come to a standstill.Hope you can read my first diagnosis on here for the whole story.I have had one lot of blood taken and cant wait to see consultant on the 24th.all the best. :wink:
  • wernotalone
    wernotalone

    Posted

    hi there it is good to hear from you, i have left a posting under (buddy-rider) i am waiting on reply to registration. It is all scary isn't it, but it takes time to adjust and come to terms with polycythaemia. since my last posting, i have had yet another pint taken off, my symptoms came back gradually, which i was not expecting. i got mild dull headaches, redness to my face, fatigue and sweats. i am due to got back to haematologist 9th sept for blood check and possibly venesection depending on my levels. i hope you are doing well. i guess we just got to accept the condition and get on with our lives as best we can.
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