Hi everyone, Throughout 2023 I noticed some changes to my health and I was diagnosed with Polycythaemia vera (PV) last November after having a TIA the previous month. On Hydroxycarbamide daily and other tablets for high blood pressure. Having a few issues with fatigue, going upstairs is like climbing a mountain just constantly having no energy, dark lines have appeared on my finger nails, feel dizzy, nauseous, some tingling and itchy/sore to touch toes, blind spots/blurred vision. Does anyone else have these symptoms. Do they eventually go away with time or medication as I always hope that tomorrow I might feel better and be able to get out the house as at the moment I can’t walk very far as I have no energy in my legs, even holding a phone takes too much effort. Having a scan next week as I am having pain under my ribs on the left side, I take it that this is my spleen. Has anyone else suffered from this, what do they do for it or how long does it last for or is it an ongoing thing. Any information would be great, thanks
Hi again JEM1 and welcome to this corner of the Community.
I am Mike and help out around our blood cancer groups. I don't have Polycythaemia Vera but I was diagnosed way back in 1999 when I was 43 with another rare, incurable type of blood cancer (Non Hodgkin’s Lymphoma) reaching Stage 4a in late 2013 so I do know this journey rather well although not this specific condition.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Talking to people face to face can help you a lot so do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Hematology Support Groups most are online at the moment….. the one i attend does have a few folks with PV in it so worth checking.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
