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!