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MPN Voice

10,437 members • 14,387 posts

All posts for February 2019

Zurich critical illness cover

I have PV and live in Ireland. I see that Zurich UK have paid out claims to some claimants. Has anyone claimed from Zurich ireland? Thank you

I have PV and live in Ireland. I see that Zurich UK have paid out claims to some...

Ardnagreine

•5 years ago

2 Replies

Et

What's everyone's symptoms with ET

Hahag

•5 years ago

12 Replies

Phlebotomy and heart rate

For those having polycythemia. Does your heart rate increased after phlebotomy.?

For those having polycythemia. Does your heart rate increased after phlebotomy.?...

Amma12

•5 years ago

8 Replies

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high count?

hello people I had my blood test yesterday and the count was at 600 my endo said that its still to high and raised my hydrea from 2 a day to 4 he wants my...

hello people I had my blood test yesterday and the count was at 600 my endo sai...

Vanuatulot3

•5 years ago

11 Replies

Newly diagnosed

This is all very new to me. I have been diagnosed with JAK2 POSITIVE myleproliferative neoplasm in the last few weeks. I'm presuming ET as it's my platelets...

This is all very new to me. I have been diagnosed with JAK2 POSITIVE myleprolife...

Devilgirl

•5 years ago

7 Replies

Diet confusion

Many of the posts I've read on here say they eat a anti inflammatory diet ? I've been reading about this and I do already eat a lot of the food suggested so...

Many of the posts I've read on here say they eat a anti inflammatory diet ? I've...

Camelian

•5 years ago

18 Replies

Anyone with JAK2 neg PV?

Hello, I'm just wondering if anyone else has JAK2 negative PV. I would love to compare symptoms and treatments. Thanks!

Hello, I'm just wondering if anyone else has JAK2 negative PV. I would love to c...

meaboutthis

•5 years ago

34 Replies

Cost of Jakafi

I went to my doctor yesterday and since I’ve had hives and burning of the skin feeling hot he is going to try to switch me to Jakafi. The cost is...

I went to my doctor yesterday and since I’ve had hives and burning of the skin ...

1466

•5 years ago

7 Replies

ET or PV with just a slight increase in red blood cells. Is that possible

Hello wonderful people. I was diagnosed with Jak2 positive at age of 32 (couple months ago). Allele Burden %10. Only aspirin. I reviewed old lab tests and they...

Hello wonderful people. I was diagnosed with Jak2 positive at age of 32 (couple ...

Joe1117

•5 years ago

6 Replies

Feeling hot?

I have been recently diagnosed with JAK2 mutation and PV. I seem to feel hot when others around me do not. Would that be the PV causing that? Also I'm in for...

I have been recently diagnosed with JAK2 mutation and PV. I seem to feel hot whe...

woodyfingers

•5 years ago

5 Replies

PV: should I go to hydroxurea or not?Age : 62

Happy to find this MPN site. My story: Male 62 years old diagnosed with PV at 57. Live in Thailand so great hospitals at low cost. But no NHS.... I am fit...

Happy to find this MPN site. My story: Male 62 years old diagnosed with PV at ...

Innessant

•5 years ago

6 Replies

Hydroxyurea break

I was on HU for many years and had it stop working. Switched to Anagrelide but having nasty side effects. Just wondering if anyone has had HU stop working...

I was on HU for many years and had it stop working. Switched to Anagrelide but ...

Ladygolf

•5 years ago

10 Replies

Interferon and neuralgia?

For the past week I've had pain from neuralgia (pain and numbness across one side of my face) - I went to the GP and was told that it would probably 'settle...

For the past week I've had pain from neuralgia (pain and numbness across one sid...

Not2bad

•5 years ago

1 Reply

Fatigue - ET or something else

Morning all The last few weeks I seem to be constantly tired and struggle to get out of bed in the mornings vs a usually being up and about by 7am. How do...

Morning all The last few weeks I seem to be constantly tired and struggle to ge...

Lina_uk

•5 years ago

16 Replies

Emotional Rollercoaster

Since starting to research this illness I've had an emotional rollercoaster. I read something and feel reassured and then read something else and become...

Since starting to research this illness I've had an emotional rollercoaster. I r...

Camelian

•5 years ago

32 Replies

My New Reality

I was diagnosed with ET last year after confirming that I have the CALR mutation. I ignored the symptoms a few years ago but thanks to my company mandating...

I was diagnosed with ET last year after confirming that I have the CALR mutation...

MJL1977

•5 years ago

42 Replies

Scottsdale Conference

Hi I live in London and have recently been diagnosed with prefibrotic Myelofibrosis. My son and his family live in Tucson and he has sourced a conference that...

Hi I live in London and have recently been diagnosed with prefibrotic Myelofibr...

kiwitraveller

•5 years ago

6 Replies

Venesection

Hi after my last test which showed platelets 273 but haematocrit 48,9 and RBC 7,03 (2pills daily) my haem. ordered that I stop Hydro and have a venesection! I...

Hi after my last test which showed platelets 273 but haematocrit 48,9 and RBC 7,...

Kelly2

•5 years ago

7 Replies

ET/MF CALR support group Facebook

Three years ago I started with a closed FB-group for patients with a MPN. We allow every patient, we do not want to be a CALR exclusive group. We have more...

Three years ago I started with a closed FB-group for patients with a MPN. We all...

WimL

•5 years ago

1 Reply

Thank you for your replies about choosing a heamotologist

As it's early days for me at the moment I'm not sure what questions I should be asking my heamotologists however my thoughts are if you can be cared for by a...

As it's early days for me at the moment I'm not sure what questions I should be...

Camelian

•5 years ago

1 Reply

Not health related - but if anyone is having trouble getting council funding for elderly relative care, feel free to contact me.

It’s taken me 13 months to get funding for my 97 year old mother. The council wanted to move her to a cheaper home with inferior care and ponging of ransid...

It’s taken me 13 months to get funding for my 97 year old mother. The council wa...

Loubprv

Volunteer•5 years ago

18 Replies

INF trial for early MF - impact of mutations

Not seen the full version before. Some interesting info albeit a couple of years old https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.30676 I believe that...

Not seen the full version before. Some interesting info albeit a couple of years...

Paul123456

•5 years ago

4 Replies

Patients' Forum - OXFORD - Wednesday 24th April 2019. 6 - 9 pm (registration from 5.30 pm)

We are very pleased to announce that we will be holding a forum in Oxford on Wednesday 24th April 2019, this will be the first forum we have held in Oxford and...

We are very pleased to announce that we will be holding a forum in Oxford on Wed...

Mazcd

Partner•5 years ago

8 Replies

New to this....!

Hi all, I’m looking for some advice please! I was diagnosed with ET, triple neg in August of 2018 and am off to see my heamotologist today for the results of...

Hi all, I’m looking for some advice please! I was diagnosed with ET, triple neg ...

Gregorcat

•5 years ago

5 Replies

Sleep Paralysis?

Evening all! Quick question, does anyone else experience sleep paralysis? I remember one occasion in my teens but it’s frequent now. I’m lucky in that I get...

Evening all! Quick question, does anyone else experience sleep paralysis? I re...

Mackydee123

•5 years ago

4 Replies

Feeling funny at times?

I have had PV Jak2 two years now. Started feeling fatigued early today which some days not so unusual. A few hours later I started getting hot and then short...

I have had PV Jak2 two years now. Started feeling fatigued early today which som...

Alex9621

•5 years ago

17 Replies

Choosing a heamotologist

Can you choose your heamotologist or do you have to be with the heamotologists in your local hospital? My reason for asking is I've read on this site about a...

Can you choose your heamotologist or do you have to be with the heamotologists i...

Camelian

•5 years ago

6 Replies

Optical Aura Migraine again!

I have ET, CALR. Yesterday, I had my 7th Aura Migraine, since mid-September. This morning, I had my 7th TIA in 3 years. I injected my belly with an...

I have ET, CALR. Yesterday, I had my 7th Aura Migraine, since mid-September. Thi...

Anag

•5 years ago

36 Replies

Bleeding gums - help please!

Hi Does anyone else out there who is taking hydroxicarbamide and has PV, have profusely bleeding gums if flossing or brushing with anything other than a soft...

Hi Does anyone else out there who is taking hydroxicarbamide and has PV, have pr...

Loubprv

Volunteer•5 years ago

17 Replies

Dizzy spells

On the 13th February I had my last 'trip' to the haema. He told me my platelets are in normal range still and to continue administering 45mcg Pegasys every 10...

On the 13th February I had my last 'trip' to the haema. He told me my platelets...

JackLina

•5 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2019

Zurich critical illness cover

Et

Phlebotomy and heart rate

high count?

Newly diagnosed

Diet confusion

Anyone with JAK2 neg PV?

Cost of Jakafi

ET or PV with just a slight increase in red blood cells. Is that possible

Feeling hot?

PV: should I go to hydroxurea or not?Age : 62

Hydroxyurea break

Interferon and neuralgia?

Fatigue - ET or something else

Emotional Rollercoaster

My New Reality

Scottsdale Conference

Venesection

ET/MF CALR support group Facebook

Thank you for your replies about choosing a heamotologist

Not health related - but if anyone is having trouble getting council funding for elderly relative care, feel free to contact me.

INF trial for early MF - impact of mutations

Patients' Forum - OXFORD - Wednesday 24th April 2019. 6 - 9 pm (registration from 5.30 pm)

New to this....!

Sleep Paralysis?

Feeling funny at times?

Choosing a heamotologist

Optical Aura Migraine again!

Bleeding gums - help please!

Dizzy spells

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