Posts - MPN Voice | HealthUnlocked

MPN Voice

10,426 members • 14,368 posts

All posts for May 2014

Does anyone have bumps under the skin on upper back of legs. Sometimes they itch. Someone said they are from arthritis? How to get rid of t

spikesnana

•10 years ago

1 Reply

Trouble with sleep

Does anyone else have nights where you just can't sleep or switch off or have terrible dreams ? What advice would you give to manage this or is it a trip to...

Does anyone else have nights where you just can't sleep or switch off or have te...

Karen1970

•10 years ago

7 Replies

The Dr increased my hydrea to 1000 mg per day. I feel nauses all the time. Any advise as to what would help. Too bad no weight loss.

spikesnana

•10 years ago

10 Replies

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Has any one been told to prepare themselves for the possibility of a bone marrow transplant. I've had ET for 14years taking Hydrox in variou

Doses over the years. Told I had changed to MF only in November last year that was such a shock.Taken of Hydrox completely 4 weeks ago only take asprin at the...

Doses over the years. Told I had changed to MF only in November last year that w...

softail

•10 years ago

8 Replies

Maz, I wonder if you could help with definition of MPDs

When we read of the heartache and in some cases misinformation people, at such a vulnerable time, especially at diagnosis have to go through, would it be...

When we read of the heartache and in some cases misinformation people, at such a...

Hidden

•10 years ago

6 Replies

PV side effects and denied Pegasus Interferon

Hello! Now this one is just for the ladies! I am not too sure if it is a side effect but i keep getting irregular periods and they are really getting me down...

Hello! Now this one is just for the ladies! I am not too sure if it is a side ef...

noodles26

•10 years ago

5 Replies

Both PV and ET at 43 yrs

I am new to this so please bear with me. I have been given the news that I have both PV and ET. I feel like I am in a box and I can't get out, scared and...

I am new to this so please bear with me. I have been given the news that I have ...

Karen1970

•10 years ago

26 Replies

MPD-PV hereditary?

Guys my dad has just told me my uncle had PV although not treated for it......I am sceptical.....what's the chances of it being hereditary?

Guys my dad has just told me my uncle had PV although not treated for it......I ...

Chelle_

•10 years ago

16 Replies

Hi folks Recently diagnosed with PV. I'm starting to get worsening pains in my legs and arms, like growing pains.

I'm a 43 year old and otherwise very healthy male. Routine blood test showed very elevated Hct and Hgb. I had radiation therapy for testicular cancer 13 years...

I'm a 43 year old and otherwise very healthy male. Routine blood test showed ver...

Ashto70

•10 years ago

9 Replies

Request from the MPN Foundation for Vietnam Veterans exposed to Agent Orange and who now have a MPN to contact them

MPN Advocacy and Education International is searching for Vietnam Veterans who were exposed to Agent Orange and now have a diagnosis of Myelofibrosis,...

MPN Advocacy and Education International is searching for Vietnam Veterans who w...

Mazcd

Partner•10 years ago

Be the first to reply

I'm on my 3rd week of hydrea. I'm so tired. Is there anything that may help. I'm still working Full time and I try to exercise as much as po

spikesnana

•10 years ago

5 Replies

I don't know what category my question goes under but here is my question. My lgm is 1010 (which I've already recieved help here from thanx)

I have chronic kidney disease stage 3 with my kidneys only working 40%. The tips of my fingers and nail beds turn a dusky blue whenever I get a chill ( I...

I have chronic kidney disease stage 3 with my kidneys only working 40%. The tips...

cathylc58

•10 years ago

6 Replies

Life Insurance for ET sufferers

Hello everyone. I am a fit 37 year old who is needing life insurance for mortgage purposes. Last May I was diagnosed with ET following tummy ache which...

Hello everyone. I am a fit 37 year old who is needing life insurance for mortga...

mellieevans

•10 years ago

3 Replies

This warm weather certainly brings back the flushes ,I can't tell if it's the PV.or the sunshiney days, But I think I might be melting!!

Anyone found a treatment to help?? Isn't it difficult to sleep?? I'm running out of nightshirts !!

Anyone found a treatment to help?? Isn't it difficult to sleep?? I'm running ou...

Twinkly

•10 years ago

3 Replies

My dad has myelofibrosis and now he is suffering from Typhoid, his spleen has grown considerably large after typhoid what should we do?

ermanuarora

•10 years ago

2 Replies

Anyone else effected by 'The wall of fatigue' ?

Sorry, but all my questions seem to revolve around fatigue !! Just wondered if others suddenly get hit by this 'wall of fatigue'. Yesterday afternoon I was...

Sorry, but all my questions seem to revolve around fatigue !! Just wondered if ...

rubyrubyruby

•10 years ago

19 Replies

Spleen

Hello All, My spleen has been acting up lately, I never used to feel it but recently when bending over to pick something up or lifting my left foot to put on...

Hello All, My spleen has been acting up lately, I never used to feel it but rec...

Alired

•10 years ago

1 Reply

platelets are normal have high red and white cells also eosonphil level are over 50 I heard to only take hydrea if platelets are over 1000

spikesnana

•10 years ago

6 Replies

I have just been refused medical exemption for free prescriptions again. Really not up for a fight at the moment. Any tips?

Tjaygrant

•10 years ago

8 Replies

Elevated red blood cells in a blood test... Recently have fatigue, weakness, burning hands, strong headaches. Got my results, ok thyroid

Can anyone help explain?? My doctor can't see me for a week and I am really confused (and a bit anxious). I am a 31-year old woman, no smoking, live at sea...

Can anyone help explain?? My doctor can't see me for a week and I am really con...

green_daisy

•10 years ago

2 Replies

Hi, I have had ET for six years now since I was 39. I have asked my doctor if I can have a medical exemption card years ago with no luck.

Am I entitled to this? I have been paying for prescriptions for years now and it would really help.

Am I entitled to this? I have been paying for prescriptions for years now and it...

Tjaygrant

•10 years ago

16 Replies

Do you get really full when you eat ? I just don't manage a whole meal these days , Yet I don't lose an ounce on the scales .why is that ???

I eat real healthy nowadays, fruit as snax ,vegetables ,all sorts ,I feel fine, but if I eat bread , meat , or cereal based food I get uncomfortable ,it...

I eat real healthy nowadays, fruit as snax ,vegetables ,all sorts ,I feel fine, ...

Twinkly

•10 years ago

10 Replies

My husband is in the UK trying to get travel insurance for when we go to Antigua next week!

The quote is £900 - he has an MPD and portal hypertension which was caused by the MPD and was how we discovered it - a clot in the portal vein etc. Is there...

The quote is £900 - he has an MPD and portal hypertension which was caused by th...

Daws

•10 years ago

8 Replies

MPN VOICE FUNDRAISING IS VERY HAPPY TO ANNOUNCE THAT WE HAVE SECURED GUARANTEED PLACES IN THE FOLLOWING EVENTS IN 2015

THE VIRGIN MONEY LONDON MARATHON - APRIL 2015 Join our team and run the World Famous Virgin Money London Marathon in 2015! Starting from Blackheath Common...

THE VIRGIN MONEY LONDON MARATHON - APRIL 2015 Join our team and run the World F...

Mazcd

Partner•10 years ago

1 Reply

Bleeding gums

Guys has anyone else experienced severe bleeding gums? I'm waking in the morning with blood in my mouth! Gums are bleeding at eating apples, ice lollies and...

Guys has anyone else experienced severe bleeding gums? I'm waking in the morning...

Chelle_

•10 years ago

13 Replies

Free Prescriptions?

I have only last week been diagnosed with PV and JAK2 positive, I was wondering whether i would be entitled to free prescriptions? I am 37 but have had high HP...

I have only last week been diagnosed with PV and JAK2 positive, I was wondering ...

Fazzer

•10 years ago

2 Replies

MPN VOICE FUNDRAISING UPDATES – WHAT’S HAPPENING IN MAY AND JUNE 2014

MAY 2014 Matt Rigby has persuaded his friends to join him on the Just Walk Event on Saturday 10th May. This challenging event starts at Goodwood Racecourse...

MAY 2014 Matt Rigby has persuaded his friends to join him on the Just Walk Eve...

Mazcd

Partner•10 years ago

Be the first to reply

SOUTHAMPTON PATIENTS’ FORUM UPDATE – PROGRAMME AND PARKING CONCESSION

The programme for the Southampton Patients’ forum has now been confirmed, full details are available on our...

The programme for the Southampton Patients’ forum has now been confirmed, full d...

Mazcd

Partner•10 years ago

Be the first to reply

I have ET,diagnosed 2008, Hydroxy 2g daily and have a very sore throat that I can't shift. Any advice would be welcome

I have ET and take 2000mg Hydroxy daily. I have had a really sore throat for the past 14 days ( Like swallowing razor blades). I saw my GP on day 4 and she...

I have ET and take 2000mg Hydroxy daily. I have had a really sore throat for the...

Val_P

•10 years ago

10 Replies

Shoulder pain

Guys has anyone experienced shooting pains in shoulder? I was woken up with it this morning and it's happened a few times throughout the day. Had first does of...

Guys has anyone experienced shooting pains in shoulder? I was woken up with it t...

Chelle_

•10 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2014

Does anyone have bumps under the skin on upper back of legs. Sometimes they itch. Someone said they are from arthritis? How to get rid of t

Trouble with sleep

The Dr increased my hydrea to 1000 mg per day. I feel nauses all the time. Any advise as to what would help. Too bad no weight loss.

Has any one been told to prepare themselves for the possibility of a bone marrow transplant. I've had ET for 14years taking Hydrox in variou

Maz, I wonder if you could help with definition of MPDs

PV side effects and denied Pegasus Interferon

Both PV and ET at 43 yrs

MPD-PV hereditary?

Hi folks Recently diagnosed with PV. I'm starting to get worsening pains in my legs and arms, like growing pains.

Request from the MPN Foundation for Vietnam Veterans exposed to Agent Orange and who now have a MPN to contact them

I'm on my 3rd week of hydrea. I'm so tired. Is there anything that may help. I'm still working Full time and I try to exercise as much as po

I don't know what category my question goes under but here is my question. My lgm is 1010 (which I've already recieved help here from thanx)

Life Insurance for ET sufferers

This warm weather certainly brings back the flushes ,I can't tell if it's the PV.or the sunshiney days, But I think I might be melting!!

My dad has myelofibrosis and now he is suffering from Typhoid, his spleen has grown considerably large after typhoid what should we do?

Anyone else effected by 'The wall of fatigue' ?

Spleen

platelets are normal have high red and white cells also eosonphil level are over 50 I heard to only take hydrea if platelets are over 1000

I have just been refused medical exemption for free prescriptions again. Really not up for a fight at the moment. Any tips?

Elevated red blood cells in a blood test... Recently have fatigue, weakness, burning hands, strong headaches. Got my results, ok thyroid

Hi, I have had ET for six years now since I was 39. I have asked my doctor if I can have a medical exemption card years ago with no luck.

Do you get really full when you eat ? I just don't manage a whole meal these days , Yet I don't lose an ounce on the scales .why is that ???

My husband is in the UK trying to get travel insurance for when we go to Antigua next week!

MPN VOICE FUNDRAISING IS VERY HAPPY TO ANNOUNCE THAT WE HAVE SECURED GUARANTEED PLACES IN THE FOLLOWING EVENTS IN 2015

Bleeding gums

Free Prescriptions?

MPN VOICE FUNDRAISING UPDATES – WHAT’S HAPPENING IN MAY AND JUNE 2014

SOUTHAMPTON PATIENTS’ FORUM UPDATE – PROGRAMME AND PARKING CONCESSION

I have ET,diagnosed 2008, Hydroxy 2g daily and have a very sore throat that I can't shift. Any advice would be welcome

Shoulder pain

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