Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for April 2019

Knock on effects from Et

Hello out there, I was diagnosed with Et aged 37 I am now 56. Over the years I have had to reduce my working days from5 to 3 then 2 and I am now thinking of...

Hello out there, I was diagnosed with Et aged 37 I am now 56. Over the years I h...

•5 years ago

Critical illness claim with ET

Has anyone successfully claimed in the UK critical illness for essential thrombocythemia? This is my policy Thank you

Has anyone successfully claimed in the UK critical illness for essential thrombo...

•5 years ago

MPN Symptom Uncovered

PV Brain Fog (likely the same for some MF & ET patients). I think this is a fairly common symptom or else I am just a little slow mentally...lol. -...

PV Brain Fog (likely the same for some MF & ET patients). I think this is a fai...

•5 years ago

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To help keep spirits up...

This popped up on my Facebook newsfeed and I thought it might be of help...

This popped up on my Facebook newsfeed and I thought it might be of help...

•5 years ago

Hi New to posting on the site

I have had ET for around 8 yrs now. Thankfully I have great family support as it has caused me lots of anxiety in life. And times where I have felt unwell...

I have had ET for around 8 yrs now. Thankfully I have great family support as it...

•5 years ago

Compression tights

Hi. I am traveling by plane soon and want to buy compression tights. Are we supposed to have them? Do you also wear them when traveling?What do I have to look...

Hi. I am traveling by plane soon and want to buy compression tights. Are we supp...

•5 years ago

new to elevated platelets

Hello everyone. I hope this post finds you well. I am 30 years old and due to insurance issues I did not go to the doctor for a few years. I recently went 6...

Hello everyone. I hope this post finds you well. I am 30 years old and due to in...

•5 years ago

I am new here was diagnosed yesterday with Polycythaemia vera KAK2 positive I am still in shock.

Would like to hear from others with my condition.

Would like to hear from others with my condition.

•5 years ago

Dentist's 'corporation'

Three years ago, I was 'pushed' into PIP, about £9000 a year! Then my "dentist" has 'persuaded' me to 'join' their plan, whereby I have a checkup every six...

Three years ago, I was 'pushed' into PIP, about £9000 a year! Then my "dentist" ...

•5 years ago

Probability of ET in family

I have JAK2+ ET diagnosed in Jan 19 & have just found out my dad is on clopidogel for 'sticky blood' having had a TIA many years ago & a blood clot behind his...

I have JAK2+ ET diagnosed in Jan 19 & have just found out my dad is on clopidoge...

•5 years ago

Essential Thrombocythaemia

I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56 years old. I work in a school and over the years have reduced my days from 5...

I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56...

•5 years ago

ET symptoms

People post all the bad experience or said they are very sick with ET and all these sounds very scary. I wonder if any statistic on how many people actually...

People post all the bad experience or said they are very sick with ET and all th...

•5 years ago

Hydroxyurea and activity

I read in the warning for Hydroxyurea that you should avoid contact sports and activities that cause bruising. I plan to ask my doctor during my next visit but...

I read in the warning for Hydroxyurea that you should avoid contact sports and a...

•5 years ago

Latest paper from Prof Harrison

Interesting new research, early days. Not that significant re reducing Allele Burden but initial results appear promising re reducing reticulin fibrosis....

Interesting new research, early days. Not that significant re reducing Allele Bu...

•5 years ago

I’m still new to this forum

Here I go again! Nine weeks and four days into treatment with Jakavi for MF I am experiencing some headaches, cold night sweating after three hours of sleep as...

Here I go again! Nine weeks and four days into treatment with Jakavi for MF I am...

•5 years ago

Mystery high HTC and hemoglobin

Hi new here My husband is 59. We live in USA.Smokes a pack of cigarettes a day. 1 year ago this all started when he became flush in face and Shakey hands.Took...

Hi new here My husband is 59. We live in USA.Smokes a pack of cigarettes a day....

•5 years ago

Relaxation audio

http://www.qehkl.nhs.uk/relaxationaudio.asp. Sorry the last link didn't work

http://www.qehkl.nhs.uk/relaxationaudio.asp. Sorry the last link didn't wo...

•5 years ago

Relaxation Audio

Hi, http://www.qehkl.nhs.uk/relaxationaudio.asp. I thought I'd share this relaxation link which has been developed by the...

Hi, http://www.qehkl.nhs.uk/relaxationaudio.asp. ...

•5 years ago

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Symptoms? HU Problems?

My platelets just hit 1,000,000 with CALR identified. Over the last 2 weeks I’ve felt light headed at times and tired. Could these be symptoms? I was...

My platelets just hit 1,000,000 with CALR identified. Over the last 2 weeks I’ve...

•5 years ago

Please talk to me!!!😢😢😢

Thanks for everyone trying to help me. I had a panic attack last night because I have what seems to be bone pain in my left side knee and deep in my upper...

Thanks for everyone trying to help me. I had a panic attack last night because I...

•5 years ago

Hydroxyurea and tongue problems

I am dealing with PV and am on Hydroxyurea 500 mg per day. Problem is that though after a month of HU , I now have good blood reports, My tongue is extremely...

I am dealing with PV and am on Hydroxyurea 500 mg per day. Problem is that thoug...

•5 years ago

Can a PV Patient Turn Myelofibrosis So Fast?

I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7 phlebotomy sessions of 500 ml each, and stopped at the end of October due to...

I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7...

•5 years ago

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