New to this.

[Jan-5931]

Hi everyone. First time on here, just found out I have ET through a routine blood test. I have had night sweats, aching joints and think I have caught every virus in the past year, could be coincidence, but at least I now know it was real. Any info would be appreciated. Thank you Jan.

[Superwoman]

Hi Jan, welcome to MPN Voice the way you describe all your symptoms I think most of us can relate to, I feel that I had been living with my ET for many years before diagnoses I had so many things wrong with me I even felt at one stage that it was all in my mind and was pulling me down, but once I had the JAK 2 test done and found to be positive In a way I was relieved that it was not in my mind, this was four years ago now.

So now I take Hydroxycarbamide and enteric coated Asprin along with numerous other tablets I feel so much better in myself, it is important to drink plenty of water a day, and a good balanced diet which includes fruit and veg, and most important and if you can plenty of exercise, but don't over do it otherwise the fatigue might kick in so know your limits.

If you want anymore details regarding your ET then Maz is the person to talk to, she can send you more information, and if you want one a buddy.

Anyway again welcome, you are not alone, although we are very rare breed we have each other and someone always has some good advice on here.

Regards

Jean

[katiewalsh]

Hi Jan, welcome. I'm also ET & jak2+. I was diagnosed a few years ago but like Jean I think I've had it longer. I find that walking regularly greatly reduces the frequency of my fatigue. Good luck. Katie

[Mazcd Partner MPNVoice]

Hi Jan, welcome to our forum. I would suggest that you read as much as you can on our website mpnvoice.org.uk, all the information on there has been written by leading haematologists, specialist nurses, and patients. There are some great videos of patients and haematologists and also some very inspiring real stories to read.

mpnvoice.org.uk/about-us/vi...

mpnvoice.org.uk/living-with...

You can also read and download any of our information booklets about ET and the medications used to treat them

mpnvoice.org.uk/about-mpns/...

I can send you copies of these in the post, just email me at [e-mail] with your address. I can also send you details about having a buddy if you would like someone to talk to, a buddy is someone who has the same MPN as you and takes the same medication, so you have someone to talk to who really does understand how you feel, and it does sometimes help to talk to someone who you don't know and that you feel you won't be burdening if you are fed up or feeling down.

We all understand how you are feeling as we all have MPNs ourselves on this forum, I myself have ET, so you are in the right place for support, advice and information.

Best wishes, Maz