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MPN Voice

10,992 members•15,371 posts

All posts for October 2018

Pv and pulsatile tinnitus

Anyone out there with PV experienced pulsatile tinnitus? I'm suffering badly and all tests inconclusive. I've read that anaemia can in rare cases, can effect...

Anyone out there with PV experienced pulsatile tinnitus? I'm suffering badly and...

Boss1

•6 years ago

9 Replies

Waiting for the call

I will call you in two weeks or maybe make that three Oh did I say I was on holiday? and my weekly hours you will agree are less than a full week - not so...

I will call you in two weeks or maybe make that three Oh did I say I was on ho...

Sand-Dancer

•6 years ago

40 Replies

How quickly do platelets climb in ET?

Hi everyone, I'm struggling with a new ET diagnosis and am finding this website extremely helpful. I'm 34 y/o and just received the formal diagnosis today...

Hi everyone, I'm struggling with a new ET diagnosis and am finding this website ...

Purple478273

•6 years ago

17 Replies

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Is a bone marrow test necessary/advised when ET is diagnosed?

Hi all, I've just received a diagnosis of ET. I'm 34 and routine blood tests during fertility treatment showed high platelet counts, once of 775 and once of...

Hi all, I've just received a diagnosis of ET. I'm 34 and routine blood tests du...

Purple478273

•6 years ago

7 Replies

First appointment

This afternoon I'm seeing a Macmillan haematology nurse specialist. My first appointment with her since being diagnosed with prv in July. I don't know what to...

This afternoon I'm seeing a Macmillan haematology nurse specialist. My first app...

john0084

•6 years ago

3 Replies

PegInterferon A or Anagrelide.

Hi, I’m MPL positive ET. Diagnosed 2 years ago and have been on Hydroxycarbamide 1g a day and 75 mg of dispersible aspirin. I have had a few horrible side...

Hi, I’m MPL positive ET. Diagnosed 2 years ago and have been on Hydroxycarbamide...

Raphael_UK

•6 years ago

8 Replies

Flu jab

Hi all! I’ve been offered a flu jab but wasn’t sure if I should go ahead with it as think I remember a post on here saying we shouldn’t have vaccines. What do...

Hi all! I’ve been offered a flu jab but wasn’t sure if I should go ahead with it...

Timjonze

•6 years ago

6 Replies

Raised platelets

My platelets have been slightly high since 2012, they were sitting at 550, they rose 4 months ago again and are now sitting at 615, l am seeing a haematologist...

My platelets have been slightly high since 2012, they were sitting at 550, they ...

Fordfiesta2009

•6 years ago

10 Replies

Difference of opinions

Hey everybody! Wanted to share my amusement! After the dramatic and unexpected for me drop of my platelets to 281 from 680 in just 24 days I contacted my two...

Hey everybody! Wanted to share my amusement! After the dramatic and unexpected f...

Kelly2

•6 years ago

6 Replies

Slightly raised platelets

Hi there, 6 months ago I had a routine blood test and my platelets were raised at 430 the 3 months ago it was checked again and was 417 I am now due to do...

Hi there, 6 months ago I had a routine blood test and my platelets were raised a...

Foreverbabes

•6 years ago

15 Replies

Isolation and UTIs

GOod morning all. I know we all struggle with fatigue and often feel despondent. I have had. UTI for about 2 years and have tried every antibiotic but...

GOod morning all. I know we all struggle with fatigue and often feel desponde...

Garden987

•6 years ago

12 Replies

CBD and ET - helpful, or a massive con?

I’ve bought some CBD oil, to see if the hype is justified, but can’t find any information on taking it alongside my other meds - 2 x baby aspirin, and 40mg...

I’ve bought some CBD oil, to see if the hype is justified, but can’t find any in...

LucyAshtonGeering

•6 years ago

17 Replies

Polycythaemia or not?

Hi All, I really wanted to ask a question which has a very important answer for me. If it turns out that I don’t have PV but an idiopathic erythrocytosis...

Hi All, I really wanted to ask a question which has a very important answer for...

Aime

•6 years ago

41 Replies

Hydroxy timing question

Hi everyone - my haemo has asked me to take one pill one day, and two the next - alternating like that from now on. I think many of you also do that kind of...

Hi everyone - my haemo has asked me to take one pill one day, and two the next -...

WileyFrench

•6 years ago

33 Replies

Good Morning

Wanted to take a few minutes to tell everyone on their journey hi and am wishing them a Good Peaceful Day today asnd everyday. Sending Prayers to All. Love you...

Wanted to take a few minutes to tell everyone on their journey hi and am wishing...

rkhabtec

•6 years ago

8 Replies

Christmas Cards

Hi Maz Order in Post with Cheque, super designs... Thanks very much M xx

pontygirl

•6 years ago

Be the first to reply

Alcohol consumption

Hi. I did not ask my doctor if I am allowed to drink wine or beer. I did not have any since I started Hydro nearly a month ago and I really don't miss it,...

Hi. I did not ask my doctor if I am allowed to drink wine or beer. I did not hav...

Kelly2

•6 years ago

23 Replies

MPN Voice Christmas Cards 2018

Support MPN Voice this Christmas by sending our charity Christmas cards, there are 4 designs available: (see pictures on our website) Woodland Christmas (14 x...

Support MPN Voice this Christmas by sending our charity Christmas cards, there a...

Mazcd

Partner•6 years ago

9 Replies

Red cell mass test

Hi, Hope you're all keeping well. I'm having a red cell mass test at Guys on monday & wondered how long results take? Will I know anything the same day?...

Hi, Hope you're all keeping well. I'm having a red cell mass test at Guys on mon...

Vicky_b

•6 years ago

7 Replies

Is Idiopathic Myelofibrosis cancer?

I’ve read a lot about this disease myelofibrosis which I’ve been diagnosed with but I’m unclear if the idiopathic before it changes the disease in any way. I...

I’ve read a lot about this disease myelofibrosis which I’ve been diagnosed with ...

Actuallyclaire

•6 years ago

6 Replies

I'm new here! This is my Story...

Good evening all, My name is Claire and I am 22 years old. Last week I was diagnosed with Idiopathic Myelofibrosis. I am Jak 2 negative. Ever since I was 16...

Good evening all, My name is Claire and I am 22 years old. Last week I was diag...

Actuallyclaire

•6 years ago

12 Replies

24 days after.

Hi, 24 days after starting the Hydro my platelets dropped from 680 to 281! My haematocrit though is 49, very slight change from 50 before. Instructions are...

Hi, 24 days after starting the Hydro my platelets dropped from 680 to 281! My ...

Kelly2

•6 years ago

12 Replies

Help

Advice please,I have ET,I take interferon alpha injections 2 times a week,tonight I took out fridge and it didn't feel cold enough,put thermostat inside...

Advice please,I have ET,I take interferon alpha injections 2 times a week,tonigh...

Jbut

•6 years ago

5 Replies

CBD oil

Has anyone with MF and on Ruxolitinib tried CBD oil? I have a good deal of pain in my back and haemo says to go to doctors to get some nerve pain pills which...

Has anyone with MF and on Ruxolitinib tried CBD oil? I have a good deal of pain ...

Graham7694

•6 years ago

10 Replies

Still getting PV symptoms...

Hi all. Having been diagnosed with PV 4 years ago, my blood counts are now "within acceptable levels" for my condition, according to my consultant....

Hi all. Having been diagnosed with PV 4 years ago, my blood counts are now "with...

Hermann

•6 years ago

15 Replies

PV and Surgery

I'm booked to have a parathyroid gland removed on November 28th. I saw the surgeon yesterday and asked her whether I had to stop taking aspirin before the...

I'm booked to have a parathyroid gland removed on November 28th. I saw the surge...

Kari1961

•6 years ago

8 Replies

Experience with Pegasys

Just joined MPN Voice, I was diagnosed with ET 2 years ago, recently had a more definitive diagnosis, CALRins5 (Type 2), other non driver mutations not known....

Just joined MPN Voice, I was diagnosed with ET 2 years ago, recently had a more ...

welshhuw

•6 years ago

23 Replies

Has anyone noticed a link between blood pressure and fatigue?

Hi all, I have been having a pretty rotten time of it recently as fatigue is kicking in more and more and I am able to do less and less. Following a TIA in...

Hi all, I have been having a pretty rotten time of it recently as fatigue is kic...

Ovingite

•6 years ago

10 Replies

The MPN research foundation Fall 2018 newsletter

Hi https://goo.gl/ZtdqF1 This link should get you the latest (Fall 2018) newsletter put out by our excellent sister organisation, the MPN Research...

Hi https://goo.gl/ZtdqF1 This link should get you the latest (Fall 2018) newsle...

Rachelthepotter

•6 years ago

Be the first to reply

Call Out to North East/ North Yorkshirè .MPN'rs

Hi All, I missed the recent Newcastle forum, however I noted on the group that some people have mentioned not knowing any other people or groups locally.If...

Hi All, I missed the recent Newcastle forum, however I noted on the group that...

ansaseeker

•6 years ago

Be the first to reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2018

Pv and pulsatile tinnitus

Waiting for the call

How quickly do platelets climb in ET?

Is a bone marrow test necessary/advised when ET is diagnosed?

First appointment

PegInterferon A or Anagrelide.

Flu jab

Raised platelets

Difference of opinions

Slightly raised platelets

Isolation and UTIs

CBD and ET - helpful, or a massive con?

Polycythaemia or not?

Hydroxy timing question

Good Morning

Christmas Cards

Alcohol consumption

MPN Voice Christmas Cards 2018

Red cell mass test

Is Idiopathic Myelofibrosis cancer?

I'm new here! This is my Story...

24 days after.

Help

CBD oil

Still getting PV symptoms...

PV and Surgery

Experience with Pegasys

Has anyone noticed a link between blood pressure and fatigue?

The MPN research foundation Fall 2018 newsletter

Call Out to North East/ North Yorkshirè .MPN'rs

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