MPN Voice

Needing reassurance - newly diagnosed

Hi I was diagnosed last week with both ET and PV - is there anybody else out there with both? I'm still trying to get my head around what I have been told and feeling very worried

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Hello Jacquis, welcome to our forum, there are some people on here that have both ET and PV so I am sure they will reply to you soon. I can completely understand how worried you are feeling about your diagnosis, it is a lot of information to try and understand, if you haven't already, I would advise you to read the information on our website mpnvoice.org.uk. If you would like to have someone to talk to I can put you in touch with a buddy, a buddy is someone who has the same MPN as you so can give you support and advice from the perspective of someone who really understands how you are feeling, all buddies registered with us have to have had their diagnosis for a minimum of 2 years, if you think this would help please email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz

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Thank you Maz I will email you - much appreciated. Jacqui

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Hi Jacquis, I started out with ET when first diagnosed and have PV now too. I felt the same as you in the beginning , its only natural to. It's been 4 years for me and I'm 46 . I'm only on baby aspirin and have a platelet count of 1.7 million ! Feel free to ask me anything, I'd love to help .

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Hiya, yes, as I understand it there are a number of "intermediate" forms where, rather than having "just" high platelets or whites or red blood cells, u have 2 of the 3. I had this for years: don't think it was any more problem than having the "pure" version.

Jane

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Hi, I "only" have ET but it is scary when first diagnosed. Especially if you look it up on the internet. I thought I'd be dead within a week, and that Hydroxycarbamide would make me glow in the dark! Still here though more than 5 years after diagnosis. My arthritis gives me a heck of a lot more trouble than my ET.

I'm sure you'll get lots of reassurance from this site, I know I have. There's never a question that's too silly to ask, because someone else will have asked it before!

Best wishes

Lizzie

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Hi thank you everyone for your replies and comments - what an amazing site this is! I am just discovering that what I had made excuses or reasons for could be part of my ET or PV. The hardest thing for me at the moment is fatigue and concentration. I will keep looking on here for reassurance it all seems very positive and 'normal'. Like you Lizziep I thought my days were seriously numbered. Does everybody hold down jobs and live a regular life? Thank you again.

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Hi Jacquis, I also have ET only but want to give you a warm welcome. This forum is amazing. I've been on it less than 1 year but some of what I've read that people do for fatigue is: light exercise, yoga, change to a very healthy diet, drink tons of water, the usual of taking naps & finding ways to conserve energy. And there are a number who hold jobs & live a "pretty normal" life. But it's really important to know that people's symptoms and the intensities of symptoms (like fatigue, lack of concentration) vary all over the place; even though you may have the identical diagnosis. We're often very different. But I've read that many people here have both of your symptoms. And if you take a look, there's a list of subjects, such as symptoms, that you can click on & read. Quite a few people have found a huge improvement by changing their diets: less or no meats, processed foods, lots of vegetables, etc. I'm not disciplined enough yet to do that but will definitely make the change if I have a lot of problems. Good luck, remember no question is too dumb & that you have a big group of us who care how you are feeling; both physically & emotionally. Katie

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Thank you katiewalsh for your reply. Just knowing there are people I can talk to and ask questions has helped. i will start by understanding my symptoms more. Thank you again.

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Hi Jacquis, I was originally diagnosed with ET and this has moved to MF recently. Up until now I have broadly been OK. Still working full time and running around after my 7 year old. If I get a bug it does seem to knock me flat though and if I overdo things I can get extremely fatigued. I have changed my diet to s much healthier one ( not perfect but 80% of the time ), I exercuse with a trainer and I am working my way back yo yoga following back problems as I find it really relacing and uplifting too. Good luck

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Thank you Mrs Average - I bet your 7 year old keeps you on your toes! Is there anywhere where I can find what's good to eat and what's not?

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My partner age 33 was diagnosed Monday he has a 3rd of et mf pv jak2 + ,was on asprin they were stopped when results came back just having venesection at min ,should b starting interferon soon .

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