MPN Voice
2,933 members4,455 posts

PV not alone! Found this by accident

Hi I'm on Hughes syndrome forum and live in Long Island New York! I have a host of autoimmune diseases and I also have had PV for about 16 or 17 years! I DX'd myself way b4 they made me go to doctor! My problem was when I needed surgery my white count as well as my red count up and my doc got tired of writing letters swing it was ok to operate when he didn't know why! I knew, but told no one! Liked it that way! I went to Hemo told him what I have and went for tests! I came back positive , but he said he don't know why I have a high white count? Going as hi as 20 at times without any infection! Then I read with PV that ur white count can go hi too? It that correct? I also have Hughes syndrome which is a thick blood disorder labeled sticky blood! PV the nurses as they saw my blood come out said was sludge! One time it clot tested on needle and nurse knew she was in vein and wen pulled out the needl there was the clot! I was 13 yrs under care of this Hemotologist and had to loose my left leg b4 being DX'd with Hughes! I'm ok tho I deal ok! I'm a vital 63 yr old and my PV was in remission, but not well and getting that full feeling again and my blood counts going up! Does anyone have any memory problems? I was just put on spirit for PV nothing else and Phlebotomies! Was there any other meds I shud have been on! It seems England, UK has a much better awareness of most rare diseases! I've luckily found this forum and my sister too has Hughes Syndrome/ Sticky Blood too! We find these forums in Uk very helpful! Am curious about my white count always hi and no answers! Thx in advance for any answers! Wow can't believe I found this site! Some of us Sticky Blood /Hughes Syndrome people have PV! I got it in my mid 40's and they tod me most common in Mrs in 60's? I guess that's true, but seem like many younger women have it too??? Godspeed to Y'all!

2 Replies

Hi, Welcome to this great group. Like you, I live in U.S. and find this a great place for info. Unlike you, I have ET JAK pos & I don't have memory problems but numerous people on this forum say they do. Maybe you can find more if you go to the topics list and look through symptoms. I think you may not have had many replies because your question about memory problems wasn't listed as the subject of your post. And was kind of buried in your lengthy post so without reading a lot first, people may not have known you had a question. Good luck! Katie


Awe thx! Sorry I tend to go off on a tangent sometimes! Thx for ur response! My sis told me to be tested for Lymes Disease! I have suddenly night sweats and excessive sweating all day long in freezing air conditioning! Can't walk 2 feet without dripping! Ver uncomfortable! I just can't figure this one out! I think many people with PV have JAK gene? Feel good & GODSPEED!!!


You may also like...