Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for August 2012

Excessive thirst

I seem to be very tired alot of the time and drink pints of soft drinks a day, this seems to have been going on before my diagnosis of ET which was 6 months...

I seem to be very tired alot of the time and drink pints of soft drinks a day, t...

stevenjust

•12 years ago

8 Replies

Reduced platelets and feeling worse?

Has anyone else experienced this. My Platelets weree over 1,000 now they are starting to come down, only with baby asprin, but I feel worse. Feeling more...

Has anyone else experienced this. My Platelets weree over 1,000 now they are sta...

tinaj

•12 years ago

3 Replies

I have MF and wondered if anyone has had the opportunity to help with research into this illness.

I would like to assist by giving details of my life, past health problems and work history to try and find out why I have this illness now and what causes ET...

I would like to assist by giving details of my life, past health problems and wo...

Hidden

•12 years ago

12 Replies

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I have PV and Atrial Fibrillation the heartman wants me to go on warfarin, Can anyone help

hollymae

•12 years ago

3 Replies

Has anyone been able to claim DLA With ET ?.

josiede

•12 years ago

16 Replies

travel insurance

I had a TIA caused by PV last year has anybody got any advice on travel insurance, i was thinking of getting a sainsburys credit card it has travel insurance...

I had a TIA caused by PV last year has anybody got any advice on travel insuranc...

pedders

•12 years ago

16 Replies

Has anyone experienced a sudden fall in white blood cells and neutrophils with ET when on hydroxyurea?

gset

•12 years ago

1 Reply

Critical Illness Life Insurance

I was told by another member that we can now claim on any Critical Illness Life Cover we may have. I thought I had this and looked into it - only to find that...

I was told by another member that we can now claim on any Critical Illness Life ...

sussexgirl

•12 years ago

5 Replies

What are the alterntives to Warfarin if one faces a life time on it (age 46) for PVT and MPD. Heparin intolerant so that is not an option.

Daws

•12 years ago

1 Reply

Christmas Cards, helping to spread the Word.

On enquiring with MPD Voice I was delighted to hear that they hope to have Christmas Cards, specific to MPD, available to order online this year. Not only...

On enquiring with MPD Voice I was delighted to hear that they hope to have Chris...

Hidden

•12 years ago

16 Replies

Very often urinate during night and day

I have PV and drinking daily minimum 3l of water but I urinate by day and by night sometimes at every 10 minute . Anyway during the night I urinate 7-10...

I have PV and drinking daily minimum 3l of water but I urinate by day and by nig...

cata

•12 years ago

6 Replies

How many of us have access to a clinical nurse specialist in MPN's ?

ETphonehome

•12 years ago

16 Replies

Is it "safe" for someone with PV to walk at 11,000 ft. or higher? Mike Hogg m_hogg25@hotmail.com

emmajanice

•12 years ago

2 Replies

PV and ET

Has anyone been told that they have PV and ET I'm a little confused. I was first diagnosed with PV only but now ET. I have high platelets and red cells. Just...

Has anyone been told that they have PV and ET I'm a little confused. I was firs...

Ginny11

•12 years ago

6 Replies

Could you please tell me what a T.I.A is? Thank you.

isidora4

•12 years ago

4 Replies

Anyone with low hemoglobin due to hydroxycarmbamide?

my hemoglobin is 10 at the moment, my hemp at last visit said he might have to change my medication not sure what to. i am feeling really tired at the moment,...

my hemoglobin is 10 at the moment, my hemp at last visit said he might have to c...

gbeam

•12 years ago

13 Replies

i get fungal infections on my feet. Any suggestions what to use or not use

liarose

•12 years ago

1 Reply

i get very red spotty face any sugggestions what to do

liarose

•12 years ago

1 Reply

Statins ?

Does anyone else take statins ?

ETphonehome

•12 years ago

3 Replies

Myeloproliferative Disorders: The problems of being unusual.

I was diagnosed with Polycythaemia Vera in December of last year. I think I will identify with many of those people who say that they have been unwell off and...

I was diagnosed with Polycythaemia Vera in December of last year. I think I wil...

Hidden

•12 years ago

15 Replies

Has anyone been taking both Hydroxycarbamide AND analgrelide?And if so how have you been managing>

Florence1961

•12 years ago

6 Replies

MF BMT (SCT) Transplant Survivor

Hi, I was diagnosed with MF in 2010 and had a Stem Cell Transplant in March 2011, I live just outside London. I do buddying for MPDVoice and have just taken...

Hi, I was diagnosed with MF in 2010 and had a Stem Cell Transplant in March 2011...

MFBMT2011

•12 years ago

18 Replies

I'm really looking forward to my son's wedding but I'm also dreading it because I'm going mad with wet hair from head and upper body sweats

Does anyone else have random excessive sweating bouts all through the day and night. I am tormented and embarrassed by this. If I get anyway warm or have...

Does anyone else have random excessive sweating bouts all through the day and ni...

Hidden

•12 years ago

6 Replies

Would a person with ET be suitable for a gastric bypass?

Val_P

•12 years ago

1 Reply

Cardiff Patients' Forum - 4th October 2012

MPD Voice will be holding a patients' forum in The Parc Hotel, Cardiff on Thursday 4th October from 6 - 9 pm. Why don't you come along, you are welcome to...

MPD Voice will be holding a patients' forum in The Parc Hotel, Cardiff on Thursd...

Mazcd

Partner•12 years ago

1 Reply

Does anyone feel like they're hot when others are comfortable?

I feel like I'm on fire when I'm sitting in the air conditioning. Being outside this summer is miserable.

I feel like I'm on fire when I'm sitting in the air conditioning. Being outside ...

BlessedWithSix

•12 years ago

23 Replies

Is there anyone out there who has MPD Jack2 pos but unclassifiable. I have yet to find anyone that I can perhaps share some knowledge.

fannetastic

•12 years ago

28 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2012

Excessive thirst

Reduced platelets and feeling worse?

I have MF and wondered if anyone has had the opportunity to help with research into this illness.

I have PV and Atrial Fibrillation the heartman wants me to go on warfarin, Can anyone help

Has anyone been able to claim DLA With ET ?.

travel insurance

Has anyone experienced a sudden fall in white blood cells and neutrophils with ET when on hydroxyurea?

Critical Illness Life Insurance

What are the alterntives to Warfarin if one faces a life time on it (age 46) for PVT and MPD. Heparin intolerant so that is not an option.

Christmas Cards, helping to spread the Word.

Very often urinate during night and day

How many of us have access to a clinical nurse specialist in MPN's ?

Is it "safe" for someone with PV to walk at 11,000 ft. or higher? Mike Hogg m_hogg25@hotmail.com

PV and ET

Could you please tell me what a T.I.A is? Thank you.

Anyone with low hemoglobin due to hydroxycarmbamide?

i get fungal infections on my feet. Any suggestions what to use or not use

i get very red spotty face any sugggestions what to do

Statins ?

Myeloproliferative Disorders: The problems of being unusual.

Has anyone been taking both Hydroxycarbamide AND analgrelide?And if so how have you been managing>

MF BMT (SCT) Transplant Survivor

I'm really looking forward to my son's wedding but I'm also dreading it because I'm going mad with wet hair from head and upper body sweats

Would a person with ET be suitable for a gastric bypass?

Cardiff Patients' Forum - 4th October 2012

Does anyone feel like they're hot when others are comfortable?

Is there anyone out there who has MPD Jack2 pos but unclassifiable. I have yet to find anyone that I can perhaps share some knowledge.

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