Hi I am 46 & newly diagnosed ET jak 11+. Does anyone know of a good haematologist in the Greater Manchester area who specialises in MPD 's?

[malachy]

I was recommended Guy Lucas but have read he has retired ??? It is great to have a forum like this with people that understand this condition! Many thanks.

[Jenks]

Hi, I was diagnosed with ET 8 years ago when I was 30. I've since had 2 children and have been under the care of Dr Lucas and a specialist obstetrics/haematologist Dr Hay both of whom were excellent. I'm now being seen by Dr Sarah Burns at the MRI. I've seen her twice and she really seems to have a good grasp of ET and particularly ET in younger people like us. The department as a whole seems to be up with new research and I've had no problems. How are you feeling about your diagnosis and were you diagnosed at the MRI?

[malachy]

Hi, thank you for replying, it is really reassuring to know there is somewhere I can get referred. I am currently with Salford Royal. Although my bloods are doing really good (platlet's only fluctuating between 400 and 500, rbc 510, hmg 150 etc , ) it has still knocked me for six although friends & family don't really know how I am feeling. I have seen two Haematologist from the same department , the first told me it could change to pv in time but that I will prob not get serious worries until I am over 60 and the second I have just seentold me, in not so many words, to forget I have it , except for taking aspirin and having the blood tests, not treat it as an illness and doesn't want to know about my symptoms(intermittent and manageable thankfully) but which are the reason I went to the doctor's originally and the reason I got diagnosed :-)! I have 2 young children too (8 and 6) and my platelets were high when carrying my first at 36, but nothing came of it then. How have you managed and did it take a while to come to terms with for you ? I really appreciate your reply , thanks again and I hope you are well as bringing up children, however rewarding is tiring even without having to deal with an MPN ! Take care x

[rubyrubyruby in reply to malachy]

Hi. I was diagnosed this year too. I am 37 with 2 young kids as well. My platelets had also been above normal for years but it was put down to pregnancy or viruses!! I have been to drs on and off for last 10 years, the time my platelets have been high, complaining off fatigue and aching joints but told I had a virus!

Finally at end of last year a nurse noticed my blood platelets were not going down and then it went from there. I was referred to consultant, who very much plays it down as does my GP. It frustrates me that they don't really know how I feel!

I have found this year tough. I have had counselling as I wasn't dealing with it well. I have found the fatigue and aching joints to be the most annoying as this often stops me keeping up with the kids.

I am currently still on aspirin as my platelets are around 750.

Take care

[Jennie_Barnes]

Sarah burns at MRI is pretty awesome dr Luca used to be my doctor before he retired but Sarah is a lot more approachable and always follows up any questions or queries you have.

[malachy]

Thank you Jennie and Jenks, two recommendations for the same person is brilliant, I am really grateful! I will look into getting referred now, I hope she will accept me :-)! Take care both of you. Diana x

[malachy]

Hi Rubyrubyruby, I am so sorry you have had such a difficult year, in my short experience of our condition it seems that many doctors do not actually understand the 'unseen' symptoms that we experience. We should invite them to the forums to give them a better understanding ! I am so thankful for MPD Voice, their associated experts and this forum as it gives me hope that if/when things progress for us they are working hard on ways of relieving symptoms and dare I say it, a cure! There however does seem to be a gap, as many of us, from what I have read and heard do actually have symptoms from the condition even if we are not on the tablets. I have also been to the doctor's with fatigue , night sweats (not the change yet :-)), aching legs, palpitations, burning /tingling feet and have had nausea type feelings intermittently and to my knowledge my platlets in last two years have only thankfully got to the 500's.!! Some of these symptoms could be attributed to other things, I suppose, but it is a coincidence if that is the case.

I sincerely wish you well and hope your symptoms subside and hopefully you can feel well enough to run around with your children.

Thank you for taking the time to reply to me. Take care.

[Stephenbennetta]

Try Dr Jowitt at Hope hospital.

[pedders]

Hi malachy

I see dr allameddine at royal oldham hes a consultant haematologist. i have pv and i see him every 3 months i was diagnosed with this in may 2011, he seems pretty good but its hard to make a comparison as hes the only one ive ever seen.

pedder.

[malachy]

Dear all thank you so much for taking the time to reply to my question. It is really good to have a choice, I will now do some research and make a decision! I hope you are all well. x