MPN Voice
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Giving a little back

Hello everyone.

Since I recieved my diagnosis in January (ET & PV), I have visited this forum regulary to help me make sense of it all, to find answers to all my many questions, emotional as well as practical ones. Now that I have had some time to absorb and digest the facts regarding my condition, I think it's time to share my own experience and maybe this will be helpful to someone else.

My symptoms started about 18 months prior to diagnosis. I experiensed visual disturbances: zig zags in the periphery of my field of vision and blurring. I had never had this before so I Googled it and discovered it was an 'Ocular Migraine' and nothing to worry about. Then I started getting a burning sensation in my fingertips followed by bruising under the nails. Initially, I thought this could be artritis so consulted my GP, who had never seen this before. I had a blood test which was negative. My GP said to leave it and to put it down to 'one of those unexplained things'! So I carried on as normal but still had the symptoms and felt more and more tired and not myself.

I am a glassblower and my job is very physically demanding (and hot!) but I was really starting to struggle with working 4 days a week and then my heart started playing up. I am 38 and fairly fit so this really frightened me. It felt as if my heart was struggling to pump my blood round my body and would do an extra massive pump which sometimes was so powerful I could feel the blood surge up to my head. Back to my GP who then suggested a series of blood tests and from that, a referal to the haematologist.

I am now on Hydroxycarbamide 500 x 9 a week and Aspirin 75mg daily plus venesections when the need arises. I now know that visual disturbances, the bruising and my atopic heart beats were all down to my elevated platelets and haemoglobin and I have not had any symptoms since starting treatment. Well, what I really mean is that I have swapped them for different ones! I now have very dry skin, aching bones and I still get tired but at least I'm still here :-) So that is enough for now. I have so much more to share but it will keep till next post. Keep well to you all

1 Reply

Hi glassadict

Pleased to hear you have got a firm diagnosis. I think knowing what you have makes it a bit easier to deal with. I have PV only (so far), treated by venesection only apart from anti-histamine meds to try to control the itching. I too find some of the symptoms frightening, especially to do with the heart beat, vision and the fatigue. It is good to share everything and know you are not alone and can speak to people who really understand what you are going through. Take care, best wishes Aime


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