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MPN Voice

10,435 members • 14,384 posts

All posts for May 2017

PV Red spots

Many red spots showing up on arms over past several weeks. PV Dx about 3 months ago. Anything to worry about?

Many red spots showing up on arms over past several weeks. PV Dx about 3 months ...

leonbyerley

•7 years ago

6 Replies

Polycythemia and critical illness cover

Hi all Thanks for all those who said about making a claim on their insurance. I made a claim a couple of months ago and have just been paid out with no...

Hi all Thanks for all those who said about making a claim on their insurance. I ...

Nozboz

•7 years ago

12 Replies

Which is worse - Jak2 positive or Jak2 negative?

I personally have Jak2 negative with my ET. Platelets remaining stable around 350. Fatigue and Fuzzy head comes and goes randomly! I have recently increased my...

I personally have Jak2 negative with my ET. Platelets remaining stable around 35...

retromicky

•7 years ago

6 Replies

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Seeking partners of Polycythemia sufferers

Hello my husband was recently diagnosed with polycythemia, we have been told the JAK2 test was negative though I gather this does not rule out polycythemia...

Hello my husband was recently diagnosed with polycythemia, we have been told the...

wannahelp

•7 years ago

2 Replies

New member intro, diagnosed with MF in 1996

Hi All, new member intro, diagnosed with MF in 1996, jak2+, currently on hydroxycarbamide (hydrea) and aspirin. Doing well.

Hi All, new member intro, diagnosed with MF in 1996, jak2+, currently on hydroxy...

Simon96

•7 years ago

16 Replies

Pv, who do you see?

Hi all I'd like to ask which nhs professionals do you see and how often? I'm a bit underwhelmed by information and wondered if others have the same experience....

Hi all I'd like to ask which nhs professionals do you see and how often? I'm a b...

Emeraldpv

•7 years ago

6 Replies

Abnormal blood test

Hi everyone. Haven't posted on here for a while. Hope everyone is ok. I had a recent blood test that showed an abnormal result for liver funtion. I was...

Hi everyone. Haven't posted on here for a while. Hope everyone is ok. I had a re...

Yasmin86

•7 years ago

9 Replies

Does fatigue come on gradually

Hi Katie. I did write the other day but don't know if you received it. My heamo. Said last Monday that. My fatigue isn't connected to ET or meds. And that I...

Hi Katie. I did write the other day but don't know if you received it. My heam...

Garden987

•7 years ago

12 Replies

ET Diagnosis

Hello, I have just joined this forum. I have been recently diagnosed as ET JAK2 positive following a spell in hospital and the loss of a toe due to a blood...

Hello, I have just joined this forum. I have been recently diagnosed as ET JAK2 ...

DavidBates

•7 years ago

9 Replies

BMB score

Hi I apologise if this is duplicated but my last post seems to have disappeared. I have previously seen a post on here about a BMB score. I asked my nurse what...

Hi I apologise if this is duplicated but my last post seems to have disappeared....

Skye333

•7 years ago

13 Replies

Interferon Alpha

Hi everyone, just been put on interferonAlpha, is there anybody that can share their experiences of this drug as it seems pretty scary the side effects and...

Hi everyone, just been put on interferonAlpha, is there anybody that can share t...

Vennie

•7 years ago

23 Replies

ADD ME TO THE LIST

So.... I saw the haem today and she confirmed the diagnosis of ET. I had a BMB 3 weeks ago and have been having weekly blood tests as well as being on HU for...

So.... I saw the haem today and she confirmed the diagnosis of ET. I had a BMB 3...

Chris3875

•7 years ago

2 Replies

London Patient Day - Living with MPNs

Good evening I understand there is a forum due to take place in London later on this year. Have the details been confirmed yet ? Thank you

Good evening I understand there is a forum due to take place in London later on ...

kevinbros

•7 years ago

8 Replies

Nauesous ? due to HU or heat

Hi im feeling very nauseous today , seems longer im on HU i feel more lethargic and do get this nauseous on odd occasions .. i try to drink 2 ltr of water...

Hi im feeling very nauseous today , seems longer im on HU i feel more lethargic ...

catwoman2015

•7 years ago

4 Replies

Is Myelodisplasia an MPN?

After my BMB my consultant seems to have reclassified the name of what I have on the prescription for Hydroxy - I am Jak 2 positive as well. There seems to...

After my BMB my consultant seems to have reclassified the name of what I have on...

skipperL

•7 years ago

9 Replies

Question about terms

Hello, I am from the USA and would like some clarification. I was diagnosed with PV due to elevated platelets and HCT and a positive JAC 2. I am currently...

Hello, I am from the USA and would like some clarification. I was diagnosed with...

tsperl

•7 years ago

4 Replies

MPN (probable ET, possible primary MF), now abnormal lymphocytes. Are these related?

Background: My husband was diagnosed with an MPN last August. He is Jak2+ and had a bone marrow biopsy indicating 25% scarring in his marrow. He's only 48....

Background: My husband was diagnosed with an MPN last August. He is Jak2+ and ha...

Murryx

•7 years ago

5 Replies

Sunscreen advice for face needed please

Haem warned me about dangers of sun now I'm on hydroxy. I'm using kheils for face but I find it make my face look greasy and another one I use (forget the...

Haem warned me about dangers of sun now I'm on hydroxy. I'm using kheils for fac...

Lainy1

•7 years ago

37 Replies

Summer is here - oh dear help!!!

This is my first summer since being diagnosed with PV in December. I have been doing really well and take hydroxy 500 mg daily and venesection monthly. But I'm...

This is my first summer since being diagnosed with PV in December. I have been d...

Hilarya

•7 years ago

5 Replies

PLATELETS

I am undiagnosed with a MPN at the moment (meet with Haem on Friday) but I am on Hydrea 500mg per day and low dose aspirin and have had a BMB so I suspect I am...

I am undiagnosed with a MPN at the moment (meet with Haem on Friday) but I am on...

Chris3875

•7 years ago

6 Replies

Interesting article on thrombocytosis in today's Times

https://www.thetimes.co.uk/article/blood-test-could-save-thousands-from-cancer-nt79nd7c5

https://www.thetimes.co.uk/article/blood-test-could-save-thousands-from-cancer-n...

AndyT

•7 years ago

5 Replies

Worried

Hello , I was diagnosed with et a month ago been taking hydroxycabamide for just over two weeks starting to feel tired and aching , I am so nervous for the...

Hello , I was diagnosed with et a month ago been taking hydroxycabamide for just...

Ruthbragg

•7 years ago

6 Replies

Having problems with Reception of mpnvoice postings - help please

For the last couple of weeks I have not been receiving the mpnvoice postings. I haven't changed any of my settings, can anyone give any advice or clues. I had...

For the last couple of weeks I have not been receiving the mpnvoice postings. I ...

crapaud

•7 years ago

1 Reply

FEeling awful today

Hi Skipper. We all know where you're coming from so don't feel alone. Someone said to me "if we listen to our body's whispers we can ignore it's screams!...

Hi Skipper. We all know where you're coming from so don't feel alone. Someon...

Garden987

•7 years ago

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ET

Hello everyone, recently diagnosed ET. On 500mg HU daily. Doing well. Platelets near 1 mil. Drinking lots of water. Also on 81mg. of aspirin.

Hello everyone, recently diagnosed ET. On 500mg HU daily. Doing well. Platelets ...

sherri1111

•7 years ago

8 Replies

Excessive Thirst.

Hello all, I am finding myself drinking between 7-10 pints of liquid a day, mainly water with a small drop of cordial. To add to this I take a pint to bed and...

Hello all, I am finding myself drinking between 7-10 pints of liquid a day, main...

stevenjust

•7 years ago

5 Replies

Mpn and Jury Service

I have been called for Jury Service end of June. I returned the form accepting as I felt it was my duty but since then have been having doubts. I have E.T. and...

I have been called for Jury Service end of June. I returned the form accepting a...

mol56

•7 years ago

10 Replies

MPD life and Professor Harrison

Hi Maz. Have noticed that I haven't had a copy of MPD newsletter this year. Has my subscription run out? I also watched a video of a forum in 2014 when...

Hi Maz. Have noticed that I haven't had a copy of MPD newsletter this year. H...

Garden987

•7 years ago

4 Replies

Fatigue etc!

I have suffered with depression for 27 years since I lost my son. It's been under control for a long time now. Diagnosed with early stage MF last year and I'm...

I have suffered with depression for 27 years since I lost my son. It's been unde...

Skye333

•7 years ago

12 Replies

Retinal haemorrage

Just had eyes checked and told I had 2 pinpoint retinal haemorrages. Not surprised as plats 80 and thought could easily be caused by sneezing etc. Anyone else...

Just had eyes checked and told I had 2 pinpoint retinal haemorrages. Not surpris...

skodaguy

•7 years ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2017

PV Red spots

Polycythemia and critical illness cover

Which is worse - Jak2 positive or Jak2 negative?

Seeking partners of Polycythemia sufferers

New member intro, diagnosed with MF in 1996

Pv, who do you see?

Abnormal blood test

Does fatigue come on gradually

ET Diagnosis

BMB score

Interferon Alpha

ADD ME TO THE LIST

London Patient Day - Living with MPNs

Nauesous ? due to HU or heat

Is Myelodisplasia an MPN?

Question about terms

MPN (probable ET, possible primary MF), now abnormal lymphocytes. Are these related?

Sunscreen advice for face needed please

Summer is here - oh dear help!!!

PLATELETS

Interesting article on thrombocytosis in today's Times

Worried

Having problems with Reception of mpnvoice postings - help please

FEeling awful today

ET

Excessive Thirst.

Mpn and Jury Service

MPD life and Professor Harrison

Fatigue etc!

Retinal haemorrage

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