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 you
Joanne