Posts - MPN Voice | HealthUnlocked

MPN Voice

10,414 members • 14,356 posts

All posts for March 2017

Pulse when trying to sleep!

Hi all, When I try going to sleep I can literally feel my pulse in my neck and it's extremely uncomfortable. I don't think it's anxiety related, but it makes...

Hi all, When I try going to sleep I can literally feel my pulse in my neck and i...

Jessiefaith0717

•7 years ago

3 Replies

New ET diagnosis

Hi, I was diagnosed with ET last week after jak2 +ve (platelets over one million) I originally went to my GP one year ago with coccydinia (tail bone pain)...

Hi, I was diagnosed with ET last week after jak2 +ve (platelets over one million...

Lainy1

•7 years ago

15 Replies

Anyone heard ?

I just wondering , if anyone has heard from Chris ,or twinkly , i havent seen any posts from either of them for some time . Do hope there both okay regards...

I just wondering , if anyone has heard from Chris ,or twinkly , i havent seen an...

catwoman2015

•7 years ago

5 Replies

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Polycythemia vera

I have dignosed 3 monthe back , Polycethemia vera. My RBC were high to 8.0. I used only hydroxyurea 3, 2 and last 1 daily. My CBC showing now RBC as on lowest...

I have dignosed 3 monthe back , Polycethemia vera. My RBC were high to 8.0. I u...

Riazahmad

•7 years ago

1 Reply

Greetings from Canterbury

Hi only just found this forum, I have had et for 16 years was fine for the first ten on hydrea and aspirin but then blood changed and got quite anaemic, doc...

Hi only just found this forum, I have had et for 16 years was fine for the first...

Rastavapa

•7 years ago

31 Replies

ulcers

Hi all anyone had a tiny lump on gum ? i cant see it has its too far back in mouth after my wisdom tooth , i wonder if this can be caused by hu , i know mouth...

Hi all anyone had a tiny lump on gum ? i cant see it has its too far back in mou...

catwoman2015

•7 years ago

9 Replies

Critical Illness Claim

Hi All, I just wanted to say a thank you to everyone who helped me with information for my critical illness claim. I received confirmation from my insurers...

Hi All, I just wanted to say a thank you to everyone who helped me with informat...

si405mon

•7 years ago

4 Replies

Good to hear worries expressed by others

Hello I was diagnosed with ET + jak 2 18 months ago, I'm 67 and take hydroxy and an aspirin daily. I'm on holiday in the Canaries at the moment but wanted to...

Hello I was diagnosed with ET + jak 2 18 months ago, I'm 67 and take hydroxy and...

Linda1950

•7 years ago

7 Replies

Hydrea take2

Hi I don't think it is possible to attach documents on this site so suggest you goggle where I got this document from e.g. BC Cancer Agency Drug Manual it was...

Hi I don't think it is possible to attach documents on this site so suggest you ...

Pablo1

•7 years ago

2 Replies

Important info on hydrea

Hi everyone this attached document may help with info on Hydrea long term possible side effects. I have printed this out and keep it in my handbag in case I...

Hi everyone this attached document may help with info on Hydrea long term possib...

Pablo1

•7 years ago

3 Replies

Heart Palpitation

Hi everyone, Anyone encountered heart palpitation for ET calr +ve? Lately I had palpitation and went to seek help from doc. After various checks it showed...

Hi everyone, Anyone encountered heart palpitation for ET calr +ve? Lately I had ...

swess

•7 years ago

12 Replies

nasty blisters

I have been diagnosed for around 13 months and on Hydroxy for nearly a year . I alsohave advanced osteoporosis and now waiting for surgery on my spine...

I have been diagnosed for around 13 months and on Hydroxy for nearly a year . ...

Edgbastonian

•7 years ago

12 Replies

Patient survey results

Not sure if this has already been posted , but if it has maz can delete it....

conno61

•7 years ago

4 Replies

Myelofibrosis

Hi All I haven't posted on here for a while. My husband has Myloefibrosis his energy level is really bad - he has lots of pain in his stomach both sides even...

Hi All I haven't posted on here for a while. My husband has Myloefibrosis his en...

Hidden

•7 years ago

10 Replies

Flight socks!

I am doing a couple of very short flights this week only an hour or so each - but think I should probably wear flight socks (I have ET on HU platelets are in...

I am doing a couple of very short flights this week only an hour or so each - bu...

Helpatlast

•7 years ago

4 Replies

Alcohol guidance

Hi..I've never had any guidance on anything from my haematologist. I love my red wine and still drinking it (I have PV). I stay well hydrated drinking 2-3...

Hi..I've never had any guidance on anything from my haematologist. I love my red...

cwayman11

•7 years ago

9 Replies

Side Effects

I am having E. T. From July 15. I am taking Hydroxyurea 500 more than 18 months but my weight gain by 9kgs. I would like to know that it is good sign or not....

I am having E. T. From July 15. I am taking Hydroxyurea 500 more than 18 months ...

Kmbp50

•7 years ago

6 Replies

ET but feel great!

I had ET diagnosed in 2009 after routine blood tests revealed high platelets - and since I had had a heart attack in 2006 the consultant decided to prescribe...

I had ET diagnosed in 2009 after routine blood tests revealed high platelets - a...

michaelg

•7 years ago

8 Replies

New to this.

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...

Hi everyone. First time on here, just found out I have ET through a routine bloo...

Jan-5931

•7 years ago

3 Replies

Diet changes

Hello everyone, Recently my wife has been doin a lot of blood tests(she's 28 years old) and she has a mutated jak2 gene and is in the early stages of ET the...

Hello everyone, Recently my wife has been doin a lot of blood tests(she's 28 yea...

Cousino139

•7 years ago

11 Replies

On a lighter note; How life changes

"On the tiles" for me now means the sheer joy of standing on the cold bathroom floor at some daft hour having dragged my tired sleepy body out of bed where red...

"On the tiles" for me now means the sheer joy of standing on the cold bathroom f...

Fionnuaghla

•7 years ago

5 Replies

My Blog

Hey everyone, I've started finally my blog. The reasons behind this were that lots of people don't understand my illness and I am always meeting new people and...

Hey everyone, I've started finally my blog. The reasons behind this were that lo...

Hidden

•7 years ago

6 Replies

Frustrated

Hi I am now on a nurse led clinic only, so feeling really rubbish and having regular shivering attacks which don,t develop into anything. I phoned her up to...

Hi I am now on a nurse led clinic only, so feeling really rubbish and having reg...

hollymae

•7 years ago

4 Replies

Lifespan

I was looking at what Maz posted 8 days ago about fundraising update March 2017, and I was looking at someone's justgiving page, they are 50 and said they...

I was looking at what Maz posted 8 days ago about fundraising update March 2017...

Hannah52

•7 years ago

23 Replies

PV and hair dye

I have been diagnosed with PV for 3 months and been on hydroxy for 2 months. Already my hair is breaking very easily when I brush it. My scalp itches anyway as...

I have been diagnosed with PV for 3 months and been on hydroxy for 2 months. Alr...

Hilarya

•7 years ago

11 Replies

ET

I was dx with ET last year and had.my spleen checked at the time. Since then I asked my consultant if he would check my spleen and he answered we don't do that...

I was dx with ET last year and had.my spleen checked at the time. Since then I a...

Klys

•7 years ago

3 Replies

Iron Pills Allergy

Hi all, My doctor says that I am not creating any iron in my bone marrow, and I am allergic to the iron prescription meds that the doctors give. Does anyone...

Hi all, My doctor says that I am not creating any iron in my bone marrow, and I ...

Jessiefaith0717

•7 years ago

4 Replies

Asprin

Hi my MPN friends, Has anyone read an article in the Daily Mail today regarding, Asprin heart attack danger. I know it talks about doubling the risk for...

Hi my MPN friends, Has anyone read an article in the Daily Mail today regarding,...

Superwoman

•7 years ago

13 Replies

Does Aspirin really protect us against heart attacks?

I know that one shouldn't trust everything you read (or should that be don't believe anything) in the newspapers but this was published in the Daily Mail...

I know that one shouldn't trust everything you read (or should that be don't bel...

ChrisAnnSen

•7 years ago

8 Replies

Surgery on Monday

The hospital phoned me this morning to say that they have space for me to have parathyroid surgery on Monday, supposed to be May. I've been dreading this for...

The hospital phoned me this morning to say that they have space for me to have p...

harleydavidson

•7 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2017

Pulse when trying to sleep!

New ET diagnosis

Anyone heard ?

Polycythemia vera

Greetings from Canterbury

ulcers

Critical Illness Claim

Good to hear worries expressed by others

Hydrea take2

Important info on hydrea

Heart Palpitation

nasty blisters

Patient survey results

Myelofibrosis

Flight socks!

Alcohol guidance

Side Effects

ET but feel great!

New to this.

Diet changes

On a lighter note; How life changes

My Blog

Frustrated

Lifespan

PV and hair dye

ET

Iron Pills Allergy

Asprin

Does Aspirin really protect us against heart attacks?

Surgery on Monday

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