Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for March 2015

Good morning ,on a very grey wet Sunday ,can I ask you all .do you believe in super foods ?? Have you tried green tea? Or maybe blue berry?

I have been eating this way for almost 2 years ..brocolli every day ,green veg ,lots of tomatoes ,cabbage and greens every day ..at first I thought ,,well iv...

I have been eating this way for almost 2 years ..brocolli every day ,green veg ,...

Twinkly

•10 years ago

8 Replies

hi I'm totally new to this forum

Hello All On the 6th February thus year I was diagnosed with PV, I was devastated. You never know just what's round the corner. After being admitted to...

Hello All On the 6th February thus year I was diagnosed with PV, I was devastat...

1965_SB_2015

•10 years ago

30 Replies

Blog time

Hi lovely people, thank you hugely for all the support you have given me. You are all incredible!! Here my blog.....took a while I know; been busy :)...

Hi lovely people, thank you hugely for all the support you have given me. You ar...

Chelle_

•10 years ago

3 Replies

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Cause of headaches with ET

Does anyone know the exact cause of headaches, attributed to ET? e.g. is it possible small blood clots causing the problem? Somehow easier to put up with them...

Does anyone know the exact cause of headaches, attributed to ET? e.g. is it poss...

Tinkerbell13

•10 years ago

26 Replies

Good morning Friday ..

Need a little inspiration ?? Well you are not alone ...here we are for your support ..

Need a little inspiration ?? Well you are not alone ...here we are for your supp...

Twinkly

•10 years ago

4 Replies

Massage anyone?

Ok, so Silverstone was good.....I walked 90% of it which was my plan....INR levels keep going up and down and didn't fancy another clot....however with grit...

Ok, so Silverstone was good.....I walked 90% of it which was my plan....INR leve...

Chelle_

•10 years ago

16 Replies

Did you have a happy Mother's Day ?

I'm so lucky .my two sons are good friends ,so on Mother's Day they got together and we met up in a pub in east London .for lunch .all my grandchildren came...

I'm so lucky .my two sons are good friends ,so on Mother's Day they got together...

Twinkly

•10 years ago

15 Replies

Silverstone Half Marathon

How proud are we of these guys running 13 miles today at Silverstone. It was very cold but they did and I feel proud of them. Well done Michelle and Paddy xx

How proud are we of these guys running 13 miles today at Silverstone. It was ver...

Karen1970

•10 years ago

11 Replies

Silverstone half

Tomorrows the silverstone half! http://www.justgiving.com/Michelle-Russell13

Chelle_

•10 years ago

10 Replies

Alcohol

Hi I was wondering if anyone else has found it difficult to find a alcoholic drink that doesn't cause heartburn/acid reflux? I don't drink a lot I just enjoy...

Hi I was wondering if anyone else has found it difficult to find a alcoholic dri...

margie1

•10 years ago

14 Replies

Holiday insurance-yes, that old chestnut!!

Morning all! We've probably been here a hundred times before but can anyone recommend a good travel insurer who takes on PV/ET conditions? Off to see my friend...

Morning all! We've probably been here a hundred times before but can anyone reco...

Polly-PV

•10 years ago

8 Replies

Jon Matthias' story of MPN Leadership

Jon is a great leader in the UK MPN community and working hard to bring people together in Europe and globally. Watch his story:...

Jon is a great leader in the UK MPN community and working hard to bring people t...

andrewschorr

•10 years ago

Be the first to reply

Something for the weekend ,sir !!

Just a thought ,on a Friday ..

Twinkly

•10 years ago

2 Replies

Ruxolitinib (Jakavi) for the treatment of Myelofibrosis (MF) - Accepted for use in NHS Scotland

MPN Voice is pleased to share with you the positive outcome for the Scottish Medicines Consortium (SMC) assessment for Ruxolitinib for MF. This is very...

MPN Voice is pleased to share with you the positive outcome for the Scottish Med...

Mazcd

Partner•10 years ago

1 Reply

Is there anyone who'd like to meet up at the Tea Party? !

I really like to test this out as an ongoing event for people to bring friends and family, and share experiences, and meet up, and chat. I will keep putting...

I really like to test this out as an ongoing event for people to bring friends a...

Hidden

•10 years ago

4 Replies

For anyone feeling tired/ floppy / demotivated? Read on......

Well, here's something different! This is a very long post but it may help you. As anyone who's read my posts over the last few years will know, I'm usually a...

Well, here's something different! This is a very long post but it may help you. ...

Loubprv

Volunteer•10 years ago

15 Replies

Time for a smile on a sunny Tuesday morning !!

Try really hard to live life to the full. Maybe a small step to start.. Try a new type of tea .so many lovely different flavours ..try making home made cake...

Try really hard to live life to the full. Maybe a small step to start.. Try a ne...

Twinkly

•10 years ago

5 Replies

ET and sore feet

Hi I have ET platelets around 750 on Roferon and aspirin I have just had surgery /reconstruction on my ankle 8 weeks ago Would love to know if anyone has...

Hi I have ET platelets around 750 on Roferon and aspirin I have just had surger...

Ssnbll25

•10 years ago

2 Replies

MPN Voice Runners at The Addidas Silverstone Half Marathon Sunday 15th March

They've been out training in the wind and rain! In the dark! And now the final few days before waking up on Sunday morning, knowing that they have to run over...

They've been out training in the wind and rain! In the dark! And now the final f...

MarilynMPNVoice

Fundraising•10 years ago

Be the first to reply

Tea Party 28th March The Rubens at the Palace by Buckingham Palace

Hi Everyone, I hope you all have seen Maz's post re fundraising. John is attempting to run the marathon this year. He is 40, with ET and has experienced...

Hi Everyone, I hope you all have seen Maz's post re fundraising. John is attem...

Hidden

•10 years ago

3 Replies

Crufts was really great ..I had the best time ,well yes it was tiring ,but worth every effort ..of course this week coming is resting time .

Big outings need planning ,food needs to be organised and bursts of energy mixed with short rests ..but don't give up on your interests and hobbis ....

Big outings need planning ,food needs to be organised and bursts of energy mixed...

Twinkly

•10 years ago

9 Replies

Ruxolitinib for PV

Are there many people on here who are taking Ruxo for PV in UK, how are you doing on it, are you having any side effects, how long have you been on it and what...

Are there many people on here who are taking Ruxo for PV in UK, how are you doin...

ainslie

•10 years ago

22 Replies

Starting HU

Thankyou to all you lovely people who have responded with such encouragement and positive advice. You're such a great support group and I really appreciate it....

Thankyou to all you lovely people who have responded with such encouragement and...

jamieisabella

•10 years ago

2 Replies

How to Communicate with Your Doctor

How do you have an effective visit with your doctor when it comes to clear, truthful and efficient communication? We discussed that at a recent town meeting...

How do you have an effective visit with your doctor when it comes to clear, trut...

andrewschorr

•10 years ago

3 Replies

This is something I think we all feel !!

Sometimes words don't come easy ! So I'm sending these for you !! Twinkly xxx

Twinkly

•10 years ago

13 Replies

Starting HU

Shortly to embark on HU which have been putting off and managing just with aspirin . Due to impending surgery platelets have to be lowered so no longer have a...

Shortly to embark on HU which have been putting off and managing just with aspir...

jamieisabella

•10 years ago

16 Replies

Enhanced annuity and Polycythemia Vera

Hi, I'm at a loss as a single mum, 58, polycythemia diagnosed over two years ago, blood platelets 1150. Only a small pot for a pension but I haven't a clue...

Hi, I'm at a loss as a single mum, 58, polycythemia diagnosed over two years ag...

lizl

•10 years ago

9 Replies

Well folks I'm off to crufts at NEC next week end ,,always I worry about all those visitors from around the world ,coughing ,all over me !!

What can you do if you follow a hobby that entales crowds of people ,packed into a public place , hygiene ,not at it's best I expect .so this week ill be...

What can you do if you follow a hobby that entales crowds of people ,packed into...

Twinkly

•10 years ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2015

Good morning ,on a very grey wet Sunday ,can I ask you all .do you believe in super foods ?? Have you tried green tea? Or maybe blue berry?

hi I'm totally new to this forum

Blog time

Cause of headaches with ET

Good morning Friday ..

Massage anyone?

Did you have a happy Mother's Day ?

Silverstone Half Marathon

Silverstone half

Alcohol

Holiday insurance-yes, that old chestnut!!

Jon Matthias' story of MPN Leadership

Something for the weekend ,sir !!

Ruxolitinib (Jakavi) for the treatment of Myelofibrosis (MF) - Accepted for use in NHS Scotland

Is there anyone who'd like to meet up at the Tea Party? !

For anyone feeling tired/ floppy / demotivated? Read on......

Time for a smile on a sunny Tuesday morning !!

ET and sore feet

MPN Voice Runners at The Addidas Silverstone Half Marathon Sunday 15th March

Tea Party 28th March The Rubens at the Palace by Buckingham Palace

Crufts was really great ..I had the best time ,well yes it was tiring ,but worth every effort ..of course this week coming is resting time .

Ruxolitinib for PV

Starting HU

How to Communicate with Your Doctor

This is something I think we all feel !!

Starting HU

Enhanced annuity and Polycythemia Vera

Well folks I'm off to crufts at NEC next week end ,,always I worry about all those visitors from around the world ,coughing ,all over me !!

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