Posts - MPN Voice | HealthUnlocked

MPN Voice

10,436 members • 14,386 posts

All posts for June 2015

Questions to Ask your Doctor for a PV Appointment

As a brief side note, all articles on PV Reporter now have a Print and PDF icon at the bottom so you can print any article you find interesting. -...

As a brief side note, all articles on PV Reporter now have a Print and PDF icon ...

PVReporter

•9 years ago

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Is it primary of secondary or do I have polycythemia at all , no doctor is able to confirm ?

All I am Male 28... Haemoglobin levels at 17 , Haemocrit at 52, Serum erythropoiten levels are low at 3.5 , RBC is 5.5 JAK 12 -15 and jak v617f are all...

All I am Male 28... Haemoglobin levels at 17 , Haemocrit at 52, Serum erythro...

venkita

•9 years ago

7 Replies

PV Headaches

Evening all. I hope you are enjoying the heat, myself I am not keen 😁. Anyway, can the lovely people with PV help me please. What do your headaches tend to...

Evening all. I hope you are enjoying the heat, myself I am not keen 😁. Anywa...

Karen1970

•9 years ago

5 Replies

Want to take advantage of all our features? Just log in!

Now that summer has finally arrived ,lets fill the trolley with the inexpensive healthy eating .help your immune system to get strong ...

Lets get to grips with our """new me theory ".eat well,!!!! 20 minutes walking ..breathing more deepley ..and of course smiling more often ..... Make a start...

Lets get to grips with our """new me theory ".eat well,!!!! 20 minutes walking ....

Twinkly

•9 years ago

5 Replies

Good new from London

Greetings from London where I have been representing us patients to the leaders within pharma who want to be more "patient centric." The good news is they "get...

Greetings from London where I have been representing us patients to the leaders ...

andrewschorr

•9 years ago

2 Replies

Just couldn't resist this one !!

This was obviously printed with me in mind !! Just felt I had to share it ,to make you smile...... Twinkly ....

This was obviously printed with me in mind !! Just felt I had to share it ,to ma...

Twinkly

•9 years ago

11 Replies

Good Luck with your Abseil Challenge on Saturday

On Saturday 27th June Laura Blake and Pete Taylor will be 'throwing themselves off' the front of the Golden Jubilee Wing of King's College Hospital in London....

On Saturday 27th June Laura Blake and Pete Taylor will be 'throwing themselves o...

MarilynMPNVoice

Fundraising•9 years ago

3 Replies

Have I got PV?

Hi first post so be gentle. Had routine blood test just over a year ago, went to get results & the practice nurse mentioned in passing that my red count was...

Hi first post so be gentle. Had routine blood test just over a year ago, went t...

Hidden

•9 years ago

11 Replies

Blood Transfusion Therapy?

I'm day 3 on the medication hydroxycarbamide, and after a very rocky start feeling pretty grim nauseous, dizzy, etc. on day one and a bit iffy on day two, day...

I'm day 3 on the medication hydroxycarbamide, and after a very rocky start feeli...

jeanr

•9 years ago

9 Replies

I'm not missing......

Good evening you lovely bunch of people. Feel like I've been away from here forever. I have been attempting to start up my new business. I have on,y got 8...

Good evening you lovely bunch of people. Feel like I've been away from here for...

Chelle_

•9 years ago

5 Replies

Free prescriptions ~ expensive. Do I need proof of PV link?

Hi all, I'm hoping someone can help me. I was only recently officially diagnosed with PRV (Jaq+) in February 2015. But, have suffered ill health and symptoms...

Hi all, I'm hoping someone can help me. I was only recently officially diagnose...

Kari1961

•9 years ago

11 Replies

Hello Again

This is my second time on here . I came on when I was first diagnosed and was feeling ok about it all but then wham I was scared and decided that denial was...

This is my second time on here . I came on when I was first diagnosed and was fe...

Helen1952

•9 years ago

10 Replies

People say to me ,oh really ,,you don't look ill.even on my way out of the doctors office .again this week ..

So I don't bother to tell them ..people ask me .."hi how are you ?" I say well actually .." I'm fine " I bet you say the same ..but it's not always the case...

So I don't bother to tell them ..people ask me .."hi how are you ?" I say well a...

Twinkly

•9 years ago

6 Replies

Increased red count so increased hyroxy

Recent consultation my red count is not going down so increase of hydroxy to 1000mg 2 times a week 500mg 5 times a week. On double days slight nàusea anyone...

Recent consultation my red count is not going down so increase of hydroxy to 100...

Hughesf

•9 years ago

4 Replies

I'm concerned that as we age we let ourselves go!! Come now ,don't you agree?

When we don't feel up to par the worst thing to do ,is let your appearance slip !! I sometimes wonder ,if my encouragement is falling on deaf ears ... What...

When we don't feel up to par the worst thing to do ,is let your appearance slip ...

Twinkly

•9 years ago

19 Replies

Bitter taste in the mouth every morning

I'm 55 years old and I have PV,discovered 8 years ago. I'm on Hydroxycarbamide 1pcs/2 days . I changed living from field to my home in mountain town, one year...

I'm 55 years old and I have PV,discovered 8 years ago. I'm on Hydroxycarbamide 1...

cata

•9 years ago

5 Replies

My GP is so cheeky

I've been having problems with my Hip for long time now & pains down my leg , So he examined me his first words were you need to loose weight , your not...

I've been having problems with my Hip for long time now & pains down my leg , S...

Phelpsy

•9 years ago

29 Replies

Concerns on useing hair dye with a mPD

Just wondering if anyone knows if its okay to still put colour on my roots , i have been doing this for 30 years since going grey, my concern is also is there...

Just wondering if anyone knows if its okay to still put colour on my roots , i h...

Hidden

•9 years ago

14 Replies

Charity Abseil

Hi folks This is my first post on here and hopefully a positive one. In August last year I was diagnosed with ET/PV Jak2+ following (like a lot of people) an...

Hi folks This is my first post on here and hopefully a positive one. In August ...

PT99

•9 years ago

3 Replies

Just thought I'd let you know .when iv had my treatment ,I'm feeling good ..

How do I look ???

Twinkly

•9 years ago

17 Replies

Informing family

I have E.T. JAK NEG and was diagnosed 10 years ago. In spite of informing my family of my illness, my children still ring me to ask "What is it that you've...

I have E.T. JAK NEG and was diagnosed 10 years ago. In spite of informing my fa...

mol56

•9 years ago

18 Replies

Nightcramps

Any ideas on nightcramps they are driving me mad ,

chrissie1959

•9 years ago

22 Replies

Radiotherepy

Hi everyone is ther any one out there who has an enlarged spleen and the heamotologist as recommended radiotherapy to shrink the spleen would like to know...

Hi everyone is ther any one out there who has an enlarged spleen and the heamoto...

Kisses

•9 years ago

2 Replies

My Critacal illness has been accepted.

I'm so greatful for this , I was worrying about this very much , now we can enjoy our home , without the stress of having to move to smaller property , x

I'm so greatful for this , I was worrying about this very much , now we can enjo...

Phelpsy

•9 years ago

8 Replies

Essential thrombocythemia

Enyone in Wiltshire got essential thrombocythemia jak2positive over 60 I have been on hydroxycabamide for 3 years now lots of infection platlets are 510

Enyone in Wiltshire got essential thrombocythemia jak2positive over 60 I have be...

fluffy2015

•9 years ago

8 Replies

How do you use the internet for health info?

Here we go again with a 2015 survey to tell the world how we get health info online and its value. 1,500 people told us last year. How about you taking a...

Here we go again with a 2015 survey to tell the world how we get health info onl...

andrewschorr

•9 years ago

Be the first to reply

Essential thrombocythaemie

Enyone had pleurisy pneumonia on hydroxycabamide for et for three years

fluffy2015

•9 years ago

1 Reply

Here we go again!

Just when I was starting to get comfortable here in Bristol, the rug gets pulled again. After 10 months without a consultant and receiving just RBC...

Just when I was starting to get comfortable here in Bristol, the rug gets pulled...

trevic

•9 years ago

4 Replies

Is it me or does it feel cold enough to be winter ?

I'm having trouble with the circulation in my lower legs and feet !!mind you the summer is a long time coming .what happened to flaming June ?? The weather...

I'm having trouble with the circulation in my lower legs and feet !!mind you the...

Twinkly

•9 years ago

14 Replies

Iron deficiancy

Had my review yesterday and my platelets down to 311 - having other problems as my tiredness is down to anemia - haematologist has stopped Hydroxy carbamide...

Had my review yesterday and my platelets down to 311 - having other problems as ...

Hidden

•9 years ago

17 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2015

Questions to Ask your Doctor for a PV Appointment

Is it primary of secondary or do I have polycythemia at all , no doctor is able to confirm ?

PV Headaches

Now that summer has finally arrived ,lets fill the trolley with the inexpensive healthy eating .help your immune system to get strong ...

Good new from London

Just couldn't resist this one !!

Good Luck with your Abseil Challenge on Saturday

Have I got PV?

Blood Transfusion Therapy?

I'm not missing......

Free prescriptions ~ expensive. Do I need proof of PV link?

Hello Again

People say to me ,oh really ,,you don't look ill.even on my way out of the doctors office .again this week ..

Increased red count so increased hyroxy

I'm concerned that as we age we let ourselves go!! Come now ,don't you agree?

Bitter taste in the mouth every morning

My GP is so cheeky

Concerns on useing hair dye with a mPD

Charity Abseil

Just thought I'd let you know .when iv had my treatment ,I'm feeling good ..

Informing family

Nightcramps

Radiotherepy

My Critacal illness has been accepted.

Essential thrombocythemia

How do you use the internet for health info?

Essential thrombocythaemie

Here we go again!

Is it me or does it feel cold enough to be winter ?

Iron deficiancy

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