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MPN Voice

10,403 members • 14,353 posts

All posts for April 2016

Vision out of focus

Hi I've got PV and vision from my left eye is just a bit out of focus - just wondered if anyone had the same issue. It's not blurred but just almost a bit...

Hi I've got PV and vision from my left eye is just a bit out of focus - just won...

Chris1919

•8 years ago

10 Replies

ET

A question I forgot to ask my haemotologist... Does anyone know if there is any evidence that ET can be passed on one's children. Diane

A question I forgot to ask my haemotologist... Does anyone know if there is any...

diane1959

•8 years ago

11 Replies

Me and ET

Hi have just been diagnosed with ET. This is my first blog. Very emotional to start with but now coming to terms with it a bit. Getting my Hydrea in a month....

Hi have just been diagnosed with ET. This is my first blog. Very emotional to ...

Stevef10

•8 years ago

17 Replies

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Veinasection After Effects?

Does anyone else suffer from joint pain and stomach cramps following the taking of a unit of blood? I have had PV for over 10 years and am on Hydrox 1 & 2...

Does anyone else suffer from joint pain and stomach cramps following the taking ...

Michael56

•8 years ago

4 Replies

Switch from IntronA to Peg Interferon? Anyone had experience of this?

I wondered if there was anyone out there that has experience of switching from IntronA to Peg interferon. I have PV jak 2 positive. I'm struggling...

I wondered if there was anyone out there that has experience of switching from I...

1965_SB_2015

•8 years ago

5 Replies

Venesection

Diagnosed with PV in January, had about 10 venesections one or two early one's were unsuccessful the later ones went well until Monday tried three times and...

Diagnosed with PV in January, had about 10 venesections one or two early one's w...

ian60

•8 years ago

5 Replies

New Consultant Appointment

Hello all, I hope that you are all feeling well today. I have had my appointment with a new consultant today - who was really lovely. She has decided to start...

Hello all, I hope that you are all feeling well today. I have had my appointment...

Chrissie2885

•8 years ago

2 Replies

Hospital appoiment not till 4pm ,very anxious wait

Due to see Doctor at 4pm for my latest platelet and Lhd test results , i nearly cancelled because im in severe pain with my back since weekend ,walking and...

Due to see Doctor at 4pm for my latest platelet and Lhd test results , i nearly ...

Hidden

•8 years ago

18 Replies

Stop taking medication

I would like some advise,. I have recently stop taking my medication as it was making me feel very unwell, I have not told my consultant and I can't get hold...

I would like some advise,. I have recently stop taking my medication as it was m...

sjdard

•8 years ago

27 Replies

Spleen pain??

I have ET, diagnosed about 5 years ago, I have been on HU, also aspirin, for around 3 years. I have had ongoing pain under my left ribs for around 12 months. I...

I have ET, diagnosed about 5 years ago, I have been on HU, also aspirin, for aro...

lizzziep

•8 years ago

14 Replies

ET and tiredness

Thank you to all who replied to my query on tiredness. I will take on board what was said re exercise and hydration. This mornings results were that my...

Thank you to all who replied to my query on tiredness. I will take on board wha...

diane1959

•8 years ago

7 Replies

PC and weight loss

Hi everybody. I was diagnosed with PC a year ago and am managing well on Aspirin and venesections every 8 weeks or so. I am very fortunate as my worst...

Hi everybody. I was diagnosed with PC a year ago and am managing well on Aspiri...

Splb3317

•8 years ago

6 Replies

ET and tiredness

Hi I am Diane .I was diagnosed with essential thrombocythemia in July 2015. I have been taking hydroxycarbamide 500mg caps each day. My platelets have stayed...

Hi I am Diane .I was diagnosed with essential thrombocythemia in July 2015. I h...

diane1959

•8 years ago

18 Replies

Splenectomy options

My husband is currently in hospital with bleeding from gastric varices. This is his 3rd admission in 6 weeks. He was diagnosed with PV & ET 8 years ago and...

My husband is currently in hospital with bleeding from gastric varices. This is ...

Seashell226

•8 years ago

9 Replies

I'm taking Part in the Great North Run , yekkkkks 🙏❤️💗💙🚶🏻👟🚶🏻🏆

My Great North Run sponsor page for MPNvoice as some of you were asking to sponsor Me & my Daughters Adele X I would be very greatful for any donations No...

My Great North Run sponsor page for MPNvoice as some of you were asking to sp...

Phelpsy

•8 years ago

5 Replies

Results of Pegasys Study

As I mentioned in a post a couple of weeks ago the clinic I attend now has about 45 patients on Pegasys, with very encouraging results for both ET and PV. They...

As I mentioned in a post a couple of weeks ago the clinic I attend now has about...

AndyT

•8 years ago

41 Replies

I am new to PV and this website

Hi, I was diagnosed with PV about a year ago. Have had four phlebotomies so far. I live in the US so I hope I am not intruding. Does everyone have to keep...

Hi, I was diagnosed with PV about a year ago. Have had four phlebotomies so far....

Kinsalelady

•8 years ago

37 Replies

Bleeding mouth

I was on the phone last night when my husband started flapping about trying to get my attention. When I hung up my hubby told me to go to the bathroom and...

I was on the phone last night when my husband started flapping about trying to g...

jillydabrat

•8 years ago

8 Replies

Spleen reduction with Hydroxy Urea?

Hello all, Have a question related to HU and its ability to reduce spleen size. Has anyone used this medication for the purpose of spleen reduction. Since my...

Hello all, Have a question related to HU and its ability to reduce spleen size....

Csp928

•8 years ago

3 Replies

Test results....

Hi all, sorry for delay in replying and thanks for all your replies RE Sigmoidoscopy. Had the test as a result of bleeding and was all clear. Had polyp removed...

Hi all, sorry for delay in replying and thanks for all your replies RE Sigmoidos...

Calmat

•8 years ago

3 Replies

The MPN Voice London Marathon Team

On Sunday morning the MPN Voice London Marathon Team, Helen Bass, Sam Beevor and Trevor Buckley, sadly James White has an injury and won't be able to run, will...

On Sunday morning the MPN Voice London Marathon Team, Helen Bass, Sam Beevor and...

Mazcd

Partner•8 years ago

2 Replies

This is going to be interesting. Totally irrelevant I suppose but the challenge will keep me going.

As I never attended college, in fact I never completed high school in Canada because of bullying, I always felt that I had failed myself somehow. I knew I had...

As I never attended college, in fact I never completed high school in Canada bec...

jillydabrat

•8 years ago

24 Replies

Odds of ET progressing in young patients

Hi all, This is my first post here, hello. I'm 23 and have just been diagnosed with ET after a routine blood test found high platelets. I'm just on asprin...

Hi all, This is my first post here, hello. I'm 23 and have just been diagnosed...

MattLovesu

•8 years ago

11 Replies

Struggling to cope :(

I'm new here, so apologies if this is the wrong way to go about things! My partner has PCV with low iron, we've recently been told his prospects are not very...

I'm new here, so apologies if this is the wrong way to go about things! My partn...

KatQuinzel

•8 years ago

22 Replies

Symptoms and disease duration

Hi everyone! I got a question for all of you: there is a correlation between symptoms and disease duration? They appear with the duration of the disease or...

Hi everyone! I got a question for all of you: there is a correlation between sym...

Davide1984

•8 years ago

7 Replies

Happy birthday (in more ways than one)

Hi All - today is my 45 birthday. Not only that it is exactly (to the day) one year since I was diagnosed with PMF. My 44th birthday as you can imagine was...

Hi All - today is my 45 birthday. Not only that it is exactly (to the day) one ...

Lesleyt10

•8 years ago

18 Replies

Good Luck to the MPN Voice London Marathon Runners

Well the time is fast approaching for the claxon to sound, the start of the London Marathon. Good Luck to all our MPN Voice runners, Helen Bass, Samuel Beevor...

Well the time is fast approaching for the claxon to sound, the start of the Lond...

MarilynMPNVoice

Fundraising•8 years ago

1 Reply

1/2 Marathon here I come 🏆

My Daughter & I are running for MPN voice in the Great North Run , 1/2 marathon here I come , started training Sunday , I done a 5 mile walk in Cragside (...

My Daughter & I are running for MPN voice in the Great North Run , 1/2 marathon...

Phelpsy

•8 years ago

19 Replies

Clarify jargon please

As I am recently diagnosed, reading the posts is quite an education. It will help with my first hematology appointment later this week. (Yes I am an American...

As I am recently diagnosed, reading the posts is quite an education. It will hel...

EileenMcL

•8 years ago

5 Replies

MPN Voice May 2016 Fundraising Update

I really can’t believe how quickly this year is going. So many wonderful MPN Voice supporters doing so many fantastic events, thank goodness the weather has...

I really can’t believe how quickly this year is going. So many wonderful MPN Vo...

Mazcd

Partner•8 years ago

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2016

Vision out of focus

ET

Me and ET

Veinasection After Effects?

Switch from IntronA to Peg Interferon? Anyone had experience of this?

Venesection

New Consultant Appointment

Hospital appoiment not till 4pm ,very anxious wait

Stop taking medication

Spleen pain??

ET and tiredness

PC and weight loss

ET and tiredness

Splenectomy options

I'm taking Part in the Great North Run , yekkkkks 🙏❤️💗💙🚶🏻👟🚶🏻🏆

Results of Pegasys Study

I am new to PV and this website

Bleeding mouth

Spleen reduction with Hydroxy Urea?

Test results....

The MPN Voice London Marathon Team

This is going to be interesting. Totally irrelevant I suppose but the challenge will keep me going.

Odds of ET progressing in young patients

Struggling to cope :(

Symptoms and disease duration

Happy birthday (in more ways than one)

Good Luck to the MPN Voice London Marathon Runners

1/2 Marathon here I come 🏆

Clarify jargon please

MPN Voice May 2016 Fundraising Update

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