CancerCompass message board discussion started by Paul uk on 1/25/2007 http://www.cancercompass.com/message-board/message/all,9084,0.htm Fri, 10 Oct 2008 00:00:00 GMT Fri, 10 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello AllMy name is Paul and I live in the UK. I was diagnosed with ET five years ago, although I was only told about this a couple of months ago and over the Christmas period I have had to have weekly blood test as  may platlet and white blood cell count has been rising constantly as of late.You seem to talk about this more in the US and have better understanding. My left arm becomes unable to use for upto 30mins a day as it goes numb, very hot, and starts off by changing colour until eventually it goes a purply/grey colour with pale blotches and all my veins stick out and become solid. This happens several times a day and I have been trying to discuss this with my Dr and to find out if this has anything to do with ET but I never get an answer nor do they wish to investigate or discuss this matter.If anyone can help I would very much appreciate.Very Best RegardsPaul       Paul uk Thu, 25 Jan 2007 00:00:00 GMT Hello Paul! My name is Joanne and i'm from Australia. I was diagnoised with ET when i was 30, i'm now 40yrs old. The only symptoms i have had when i first got diagnoised was a high platlet count, and a little low in hemoglobin. It wasn't till i had my daughter back in late 2005 that things got worse. I developed a huge pulmonary embolisim (blood clot) in my lung, it nearly got me, but God saved me and i'm hear and feel well.I visited my hemo the other day for my 2 monthly chech up and CBC. Usually she tells me things haven't changed and my CBC is a classic readings for ET, but this test was different.She told me my blood seems to be changing slightly. My platlets are 590pmb, which is gr8 for me, but my LDH is rising slowly. My hemoglogin is lower and have developed teardrop like cells, probably why i'm feeling tried of late, but that could be because of my daughter, she's a little rocket. My hemo said my ET could be progressing into myelofibrosis, but she said this will be clearer in a few months. God i hope its not, thats a nasty thing and kills. I'm very scared, but i have to trust God. I'm trying not to think to much about it till my next CBC in 2 months, if my CBC has changed i will need another horrible bone marrow biopsy.ET sucks and so does all diseases, but we must put out hope in God. He can heal us, He has kept me alive so far.Paul, i haven't had the symptoms like you although of late i feel pain in my feet, ankles when i walk, but it doesn't last long and the more i walk the better it gets. I do suffer with mild visual disturbances, but not too much.How old are you? My doctor said the older the better to get Et because the chances of it developing into something else like myelofibrosis is lower then if you were younger like me, more time with the desease isn't great.Hang in there Paul, i'm going to keep you in my prayers. Please remember me in yours!God bless youJoanne Jodiemarie Sat, 24 Feb 2007 00:00:00 GMT  On 2/24/2007 Jodiemarie wrote:Hello Paul! My name is Joanne and i'm from Australia. I was diagnoised with ET when i was 30, i'm now 40yrs old. The only symptoms i have had when i first got diagnoised was a high platlet count, and a little low in hemoglobin. It wasn't till i had my daughter back in late 2005 that things got worse. I developed a huge pulmonary embolisim (blood clot) in my lung, it nearly got me, but God saved me and i'm hear and feel well.I visited my hemo the other day for my 2 monthly chech up and CBC. Usually she tells me things haven't changed and my CBC is a classic readings for ET, but this test was different.She told me my blood seems to be changing slightly. My platlets are 590pmb, which is gr8 for me, but my LDH is rising slowly. My hemoglogin is lower and have developed teardrop like cells, probably why i'm feeling tried of late, but that could be because of my daughter, she's a little rocket. My hemo said my ET could be progressing into myelofibrosis, but she said this will be clearer in a few months. God i hope its not, thats a nasty thing and kills. I'm very scared, but i have to trust God. I'm trying not to think to much about it till my next CBC in 2 months, if my CBC has changed i will need another horrible bone marrow biopsy.ET sucks and so does all diseases, but we must put out hope in God. He can heal us, He has kept me alive so far.Paul, i haven't had the symptoms like you although of late i feel pain in my feet, ankles when i walk, but it doesn't last long and the more i walk the better it gets. I do suffer with mild visual disturbances, but not too much.How old are you? My doctor said the older the better to get Et because the chances of it developing into something else like myelofibrosis is lower then if you were younger like me, more time with the desease isn't great.Hang in there Paul, i'm going to keep you in my prayers. Please remember me in yours!God bless youJoanneHi Joanne,I posted a couple messages regarding my 14 y/o daughter.  Please read them.  They give some helpful info maybe you can read up on.  ttyl,Rebecca   Godspeedtoall Thu, 28 Jun 2007 00:00:00 GMT  On 1/25/2007 Paul uk wrote:Hello AllMy name is Paul and I live in the UK. I was diagnosed with ET five years ago, although I was only told about this a couple of months ago and over the Christmas period I have had to have weekly blood test as  may platlet and white blood cell count has been rising constantly as of late.You seem to talk about this more in the US and have better understanding. My left arm becomes unable to use for upto 30mins a day as it goes numb, very hot, and starts off by changing colour until eventually it goes a purply/grey colour with pale blotches and all my veins stick out and become solid. This happens several times a day and I have been trying to discuss this with my Dr and to find out if this has anything to do with ET but I never get an answer nor do they wish to investigate or discuss this matter.If anyone can help I would very much appreciate.Very Best RegardsPaul      Hi Paul,I have a couple messages posted regarding my 14 y/o daughter.  Look in  Thrombocythemia on this message board.  Maybe the info will help you out.  New to this also.  But all info is good info.  If you need to talk...whitford01@comcast.net    Godspeedtoall Thu, 28 Jun 2007 00:00:00 GMT