I'm new here.....

[robcaduk]

Hi I'm Rob and I live in Hereford, England.

I was diagnosed with PV in October. I've already had three venesections and I am taking my daily asprin. Very unsure about what the future holds but my haematologist at Hereford Hospital seems to be really on the ball.

I think I am quite lucky after reading some other posts. My main symptom are aches and pains in one leg and my foot - and a regular bout of gout plus some quite a lot of fatigue.

Can you tell me the easiest way to find out if there are any events happening in the future that I could attend? I'm very keen to learn everything I can.

Thanks a lot.

[piggie50]

Hi Rob, welcome to the forum. You will find lots of information here but probably the best place to look is mpnvoice.org.uk. there is a wealth of up to date and correct information on there together with all up coming events. Maz our editor can also put you in touch with a buddy if you think it will help.

Aches and pains and fatigue affect all of us but you gradually learn how far you can push yourself and when you need to rest.

I have had PV for 12 years. I had venesetions and aspirin for the first 8 years and now take hydroxiarbamide and clopidogrel, it's kinder on the stomach than aspirin.

Ask any questions you have and someone will answer.

I'm glad you have a Heam you can trust, that is half the battle.

Very best wishes

Judy

[mhos61]

Hi Rob,

would just like to welcome you to the forum. You have made a good decision by joining. We are a supportive lot.

Mary x

[Hidden]

Hi,

I attend Hereford County as well as I live North Herefordshire but have been underwhelmed by the Haematologist there and I am presently looking at an MPN specialist at Cheltenham.

I have ET diagnosed nearly 7 years ago and was moved onto shared care with my GP a year ago. I have been in Hydroxycarbamide since diagnosis and presently take 1000g daily M-F and 1500g sat/sun. GP takes the blood each quarter and the Haem is supposed to check the results with him quarterly and advise on changes. I then see her annually. This was agreed as my platelets were well controlled. They went haywire in the third quarter and neither did anything or spoke to each other or myself. I think shared care must be another way of saying I can’t be bothered seeing you even quarterly.

[JSKly]

Hi Rob. It's good you have found this site. It is a great support whether you are looking for information or sharing what is happening to you. I've had PV for about 19 years. When I was diagnosed I began with venesections and aspirin but a couple of years later went onto Hydroxy Carbamide (Urea). I am now on Interferon (Pegasus). The journey is an adventure and these MPNs are being increasingly understood which is great.

Wishing you every good thing.

Cheri

[Jacqx17]

Hi Rob

Welcome to the club 👍

I was diagnosed January this year PVjak2+

You'll find lots of support on here from the mpn family.

Ask any questions, there's always someone that will happily reassure you, guide or explain things to you.

I don't know what I'd do without these lovely people on here.

Anyway, Maz our leading lady is the person to help with forum dates etc.

I expect you'll hear from her soon, she always welcomes new members.

Best wishes

Jacqui 😊

[Mazcd Partner MPNVoice]

Hi Rob, welcome to our forum, as the lovely people on here have said, I would advise you to read as much as you can on our website mpnvoice.org.uk, with regards to future events, we have now finished the forums for this year, and will soon be arranging forums for 2018, once I have a forum confirmed I advertise it on our website, I send out an email or postal letter if you are registered on one of our mailing lists, I put the details on this forum and on our Facebook page. If you haven't registered with MPN Voice to receive news and updates and would like to, please email me at [e-mail] with your details. Kind regards. Maz

[robcaduk]

Thank you Maz. I look forward to hopefully attending an event next year. This forum is full of very interesting information. As I a PV newbie, I am trying to build up my knowledge of what is obviously quite a complex condition. Kind Regards Rob