Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for July 2015

A little laugh for Jedireject

" Update the force , Luke " ~ Adobe Wan Kenobe .

Helen1952

•9 years ago

7 Replies

Photo for Jedi Reject!

Hope this photo of my mum, 93, might cheer you up! Oops, lying on her side. Ah well, you get the idea! x Ps she's looking forward to meeting you.....

Hope this photo of my mum, 93, might cheer you up! Oops, lying on her side. Ah ...

Loubprv

Volunteer•9 years ago

5 Replies

Manchester meet

Thanks to Jennie for arranging the Manchester meet good to meet everybody and learn about the experiences they have had. Hope we can all meet up again .Michelle

Thanks to Jennie for arranging the Manchester meet good to meet everybody and le...

Benjamin12

•9 years ago

6 Replies

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Taiwan

Did I hear right that on the Patient Forum night, we had someone watching from Taiwan? If you are that person, I would love to connect with you! Thank you

Did I hear right that on the Patient Forum night, we had someone watching from T...

Hidden

•9 years ago

4 Replies

LIKE A PHOENIX. . . . .

Hello Peops I have an update on my MF. . . . I'm sorry to say that after a year or so my Ruxo Golden Ticket Has left me on a very sticky wicket, My oversize...

Hello Peops I have an update on my MF. . . . I'm sorry to say that after a yea...

JediReject

•9 years ago

51 Replies

MPN Voice Patients’ Forum London 24th July 2015 – video of the full forum now on the MPN Voice website

The patients’ forum held in Guy’s Hospital, London, on Friday 24th July 2015 was attended, in person, by 140 people, we were also joined by 260 people watching...

The patients’ forum held in Guy’s Hospital, London, on Friday 24th July 2015 was...

Mazcd

Partner•9 years ago

10 Replies

Breathlessness

I watched the Forum. Very interesting, but I have most symptoms well under control, including fatigue, my quality of life is excellent. But no-one mentions...

I watched the Forum. Very interesting, but I have most symptoms well under contr...

lucieboo

•9 years ago

8 Replies

Another forum in London in November

Hi everyone, my specialist nurse told me yesterday that there's another London forum on the 14th November:...

Hi everyone, my specialist nurse told me yesterday that there's another London...

tommynette

•9 years ago

2 Replies

A health unlocked get together weekend?

Hi everyone, Just thinking, and it might not work, but how nice it would be if we could all of us, from all over the country, meet up for a weekend? We part...

Hi everyone, Just thinking, and it might not work, but how nice it would be if w...

Loubprv

Volunteer•9 years ago

23 Replies

scalp problems!

Hello friends , i have been hearing alot on itchy skin as one of the many symptoms of Having a MPD, im wondering it affects anyone scalp? Even when i have just...

Hello friends , i have been hearing alot on itchy skin as one of the many sympto...

Hidden

•9 years ago

13 Replies

Thank you

To Maz and her team, Maz sorry I haven't been in touch since the forum in Inverness but have had more ops for the old bones! I would just like to say thank...

To Maz and her team, Maz sorry I haven't been in touch since the forum in Inver...

Aime

•9 years ago

6 Replies

Positive thinking and lots of exercise!

Morning all! Speaking from a drizzly blooming old Lake District, thought I'd post a photo from a couple of days ago when we actually saw the sun - seems like...

Morning all! Speaking from a drizzly blooming old Lake District, thought I'd pos...

Loubprv

Volunteer•9 years ago

8 Replies

Full length Replay of Friday London MPN Forum Now Posted

Greetings from the rainy Lake District in UK! The busy beavers at Patient Power have posted the full length replay of the educational forum from Guy's...

Greetings from the rainy Lake District in UK! The busy beavers at Patient Powe...

andrewschorr

•9 years ago

8 Replies

Re: Now have shingles!

Sorry guys and gals just going to have a bit of a moan. Did not make London forum llast week as had stomach bug and all that that entails. Over weekend started...

Sorry guys and gals just going to have a bit of a moan. Did not make London foru...

Hidden

•9 years ago

35 Replies

I want to share my WONDERFUL NEWS,

Yes its official I'm going to be a grandma / Nana in January I'm extatic ,❤️ I never thought we would ever be , My hubby & I are on Cloud 9 , My Dayghter is...

Yes its official I'm going to be a grandma / Nana in January I'm extatic ,❤️ I ...

Phelpsy

•9 years ago

12 Replies

PV and Rhumatoid Arthritis

Hi all, I've asked this question before, but as there are now hundreds more members on the site I thought I would try again. Does anyone out there have PV and...

Hi all, I've asked this question before, but as there are now hundreds more memb...

piggie50

•9 years ago

7 Replies

Polycythemia/Strokes - Statins

3 months ago my HCT was at 40 the best it has every been at for 8 years. My confidence soared and I thought WOW, I am well again, no headaches, no need to have...

3 months ago my HCT was at 40 the best it has every been at for 8 years. My conf...

Normski1

•9 years ago

11 Replies

Rising platelets

Hello all you lovely people. My platelets have been rising slowly over the last few months. I went to see my haem 3 weeks ago and he increased the hydroxy...

Hello all you lovely people. My platelets have been rising slowly over the last ...

Nickthedevil

•9 years ago

20 Replies

Look for full replay of London event

As soon as we can at Patient Power we'll post a full length replay of the London event and then we will follow with interviews on video you have not seen yet....

As soon as we can at Patient Power we'll post a full length replay of the London...

andrewschorr

•9 years ago

1 Reply

London Forum on Line

Absolutely great,congratulations to all who must have worked so hard to present it all.Husband and daughter were enlightened to see and hear everyone talking...

Absolutely great,congratulations to all who must have worked so hard to present ...

Inca

•9 years ago

4 Replies

Good morning all ,well ,so what did you all think about the forum at guys in London ? lets hear from you as to your thoughts and views .

First of all ,I personally want to thank those at MPD (as was ) voice ,,for arranging this forum .iv attended a few nowadays and each time I learn a little...

First of all ,I personally want to thank those at MPD (as was ) voice ,,for arra...

Twinkly

•9 years ago

19 Replies

I Loved the MPN London Patients forum tonight x

So glad I signed up , it was great to put faces to names . I Watched it all with my Husband , it's a lot easier for him to hear from other people than me ,...

So glad I signed up , it was great to put faces to names . I Watched it all wit...

Phelpsy

•9 years ago

21 Replies

Platelets down but RBC, Hb and PCV all going up !

Had my latest clinic appt and although platelets down from 836 to 684, my RBC, Hb and PCV continue to climb! I was diagnosed with ET (only on aspirin so how...

Had my latest clinic appt and although platelets down from 836 to 684, my RBC, H...

rubyrubyruby

•9 years ago

2 Replies

Help!

Thanks for the welcome! I'm new to the PV world and find it very over whelming! Before having time to mentally adjust to the idea of having a disease for which...

Thanks for the welcome! I'm new to the PV world and find it very over whelming! ...

ringsrud

•9 years ago

10 Replies

Just come home from clinic .my results are not so good this time .

Well I suppose we can't expect good news all the time ! But I'm no spring chicken after all ...up the broccoli .and green veg ,,eat lots of healthy fruit...

Well I suppose we can't expect good news all the time ! But I'm no spring chicke...

Twinkly

•9 years ago

14 Replies

Radioactive phosphorus

I have just come back from my haem clinic visit having been told that I am anaemic, Hb 95, and my specialist says that we need to consider my medication. I...

I have just come back from my haem clinic visit having been told that I am anaem...

Little-friend-Susan

•9 years ago

5 Replies

Anaemic/blood results??

Hello All I've been to the haematology clinic this morning and was told I was anaemic, but that they would keep my HU dosage (16 x 500 mg per week) the same...

Hello All I've been to the haematology clinic this morning and was told I was an...

lizzziep

•9 years ago

3 Replies

180 now registered for MPN Voice "TV" from London

We still have room for you to participate ONLINE in the MPN Voice event from London this Friday at 6 pm London time by registering. And we should be able to...

We still have room for you to participate ONLINE in the MPN Voice event from Lon...

andrewschorr

•9 years ago

Be the first to reply

Thank you

Though it's been a few weeks since I posted on here I've been reading all your posts and found discussions about and answers to many of my own concerns, so...

Though it's been a few weeks since I posted on here I've been reading all your p...

YogaLover

•9 years ago

13 Replies

And they Keep Coming to London Virtually!

Friday's forum now has 170 people registered to participate online. Room for 500 so where are you guys? And additional interviews will be posted online after...

Friday's forum now has 170 people registered to participate online. Room for 500...

andrewschorr

•9 years ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2015

A little laugh for Jedireject

Photo for Jedi Reject!

Manchester meet

Taiwan

LIKE A PHOENIX. . . . .

MPN Voice Patients’ Forum London 24th July 2015 – video of the full forum now on the MPN Voice website

Breathlessness

Another forum in London in November

A health unlocked get together weekend?

scalp problems!

Thank you

Positive thinking and lots of exercise!

Full length Replay of Friday London MPN Forum Now Posted

Re: Now have shingles!

I want to share my WONDERFUL NEWS,

PV and Rhumatoid Arthritis

Polycythemia/Strokes - Statins

Rising platelets

Look for full replay of London event

London Forum on Line

Good morning all ,well ,so what did you all think about the forum at guys in London ? lets hear from you as to your thoughts and views .

I Loved the MPN London Patients forum tonight x

Platelets down but RBC, Hb and PCV all going up !

Help!

Just come home from clinic .my results are not so good this time .

Radioactive phosphorus

Anaemic/blood results??

180 now registered for MPN Voice "TV" from London

Thank you

And they Keep Coming to London Virtually!

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