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Hi I got diagnosed with PV in July 2016. Put all the symptoms down to long hours and having to use a computer on a regular basis. Disturbed vision I put down to needing my eyes testing. Got diagnosed by pure chance, having to go to my GP for another problem. At the beginning, when having a number of venesections, I had quite bad dizzy spells, but was informed that this may be an inner ear problem. I still do suffer with dizziness and because I am iron deficient feel slightly off par. But on the bright side got diagnosed before anything awful happened. Haematocrit was 0.75 with a Haemoglobin of 275, so I feel pretty lucky.

As this is such a rare disease I have not found anyone to really talk to about it, so I thought I would try and find out more, as I wasn't sure if I am just being a hypochondriac. Having read some of your post, I realise I am not alone with what I have been experiencing. I do feel this is quite a lonely disease, with even general Haematology nurses not really knowing anything or much about it. The team that look after me are exceptionally lovely and supportive, but do not feel the dizziness is related to the disease, so I have generally been putting this down to low blood pressure.

The one thing I wish to ask, have people experienced or are experiencing problems with recalling things, like words to describe things, ....'word blindness'....this I am finding quite annoying and don't know if I should put this down to age, or whether being iron deficient plays a part!

Many thanks

11 Replies

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  • Hi, I have PV and I was blaming my age too but I definitely get word blindness and I think it is worse when I need blood taken off.

    Welcome to this forum, there are lots of lovely people on this forum who will give up their time for you because they know exactly how you are feeling and what you are going through. You can ask for trustworthy information from Maz our editor or visit MPN Voice website which is another great source of knowledge. Keep in touch.

    Kind regards

    Aime xxx😺😺

  • Thank you, so nice to hear from someone who understands... it's a strange one this disease because, even though my team are excellent they didn't seem able to tell me anymore about this disease other than what was in the pamphlet..

    Bev😊

  • I definitely get a mild vertigo sensation especially when I walk for 3-4 days post venesection. This time it's almost a week. Can't explain it.

  • Welcome!

    Been there, done that! (Referring to your symptoms and diagnosis)

    And I think you'll find that many of us will recognize the brain fog experience!

    Don't feel alone, we on this forum understand.

    Andy

  • Thank you so much.. i have felt that I have been overreacting and that it was all in my mind... really nice to know that people understand as they have been there.

    Bev

  • Hi bev and welcome to the family. I also get brain fog (word blindness) can be annoying when you tell your daughter the milk is in that big ehhhhhh silver machine thing.... FRIDGE

    Phew 🤔

    Best wishes lainy

  • Haha that sounds so familiar... it drives me nuts..nice to know I'm not alone 😁

  • Oh yes the brain fog is the worst of the symptoms! I have ET, not PV but still get it, and it drives me mad.

    Karen x

  • Hi Bevnb, I have similar symptoms to you dizziness and sometimes trouble finding the right word it happens usually when I'm looking for a technical or words I don't use often takes a few seconds for them to pop into my mind. To be fair I was always told I talked too fast and to take more with these conversations. I was diagnosed in November, after going to the doctors with a swollen toe. But apart from the dizziness I have no other symptoms. I'm 46 this year so not sure if the brain fog is age related. Another thing like yourself my blood pressure is borderline high so wonder if this causes the dizziness. Best of luck.

    Jason.

  • Thanks Bev and welcome. I find the sharing of information here very helpful. In fact I am very informed by your post and the replies re: brain fog. Finding words is a real problem for me. As I had ME/CFS in the past (and may still be affected by it), plus my age, I thought it was these. It's good to know that the PV can cause it too. I have found the journey very stressfull and scary at times. I found going on Hydroxea awful before the treatment started, luckily I have had no problems, them back on venasections, oh no. But it's ok. I have been lucky enough to get a great counsellor through Macmillan. She has really helped.

    Look after yourself Bev. This is a great place for contact , support and information.

    Be well

    Marylyn

  • Oh yes, I know the dizzies only too well. It is part of the condition for sure. Ask your GP for a little white tablet (forgotten the name) if it gets too bad. My hospital called it Labyrinthitis as a bad attack took me there. Just remembered I think the tablet is called Stemitil. Best wishes.

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