Et diagnosis

[karencle]

Hi diagnosed with ET yesterday. Platelet count 2300 so on treatment to bring this down. Bit scared but so good reading about it from you guys. Karen x

[Lainy1]

Hi Karen and welcometo the family.

You will get a lot of support and advice here.

Take care and best wishes lainy 😚

[Superwoman]

Welcome to the forum this is the best place to be. We are a very rare breed so that makes us special in a strange way.

I was told I had ET JAK 2 positive four and half years ago now, and take Hydroxycarbamide, Enteric coated Asprin, and numerous other tablets, and so far so good, today I saw my Haematologist and all the bloods were normal which is good. I have learnt so much from the forum over the years but if you need more information get in touch with Maz, she will send you booklets that will help, also she can arrange for you to have a buddy to talk to who has the same condition i.e ET.

One thing with having an MPN for me is that I now keep fit, eat well, (plenty of fruit and veg a must ) and drink at least two ltrs of water in a twenty four hour period more if I can, helps to keep everything flushed through your body plus keeps you well hydrated, apart from that nothing else has changed.

So keep talking to us all no matter how small the worry is, we are all here for each other, it is a great place to be, wonderful support. 😀

Jean

[mhos61]

Welcome Karen, we're all here for you.

Mary x

[Mazcd Partner MPNVoice]

Hi Karen, welcome to our forum, as you can see you are in the right place for help and support, please do get in touch if you would like any information booklets etc [e-mail]

If you haven't yet had a look at our website mpnvoice.org.uk then please do, there is lots of information on there to help you. Maz

[catkinspolymer]

Hi Karenkle, wrote this a while ago, at nearly 73 i am now one of the oldest on this web site , hope it helps.

"I have searched through my old notes on my case which may be of interest.I am now nearly a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET.

I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years.

Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP at the time did no understand the significance.

It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.?

Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close healhy college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do.

all the best hope the spelling is up to the mark.

all the best

Chris Atkins

Brit 73 years old ET diagnosed in 1996 but some evidence of MPD in 1985 12 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.Finally a grandad with my daughter having a boy who looks like me poor chap.