Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for June 2016

My MPN Charity evening

Hi just to let you all know how my Fundraising went , over 100 people turned up , & took part in Games /Raffles buffet & more , live Band to , I'm feeling...

Hi just to let you all know how my Fundraising went , over 100 people turned up ...

•8 years ago

ET or RT, that is the real question?

Hey everyone out there... :) My name is Steve from Sydney (down under) Australia etc... Thought it might be useful to have a chat and share some experiences...

Hey everyone out there... :) My name is Steve from Sydney (down under) Australi...

•8 years ago

recently diagnosed at 19

i have just been diagnosed with et at the age of 19. i was just wondering if there is anyone who has/has had this condition from around my age and could share...

i have just been diagnosed with et at the age of 19. i was just wondering if the...

•8 years ago

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Lanzoprazole

I just wondered if anyone else takes this and for how long? I've been taking it since the end of December 2014 and was told it's given as a matter of course...

I just wondered if anyone else takes this and for how long? I've been taking it ...

•8 years ago

Travel Insurance once diagnosed with MF

Hi I now have post ET mylofibrosis - but am ok - but now trying to book travel insurance and am astounded by the fact I uninsurable! Anyone found a good...

Hi I now have post ET mylofibrosis - but am ok - but now trying to book travel ...

•8 years ago

Seems like I belong here, at last??

After more than a year, I fell ill with pneumonia at theend of may 2015, the specialists tend to believe that I have cmml. During this whole year, I have...

After more than a year, I fell ill with pneumonia at theend of may 2015, the spe...

•8 years ago

A little scared

Hi all, I'm scheduled to have back surgery next week. I'm okay about that - can't tolerate the nerve pain anymore. What scares me is my detailed...

Hi all, I'm scheduled to have back surgery next week. I'm okay about that - can'...

•8 years ago

Thank you.

Thank you Aime, Inca and Ourlife for your replies. I must admit I am a bit concerned about my flight home in two days. I tried again to have my HGB checked but...

Thank you Aime, Inca and Ourlife for your replies. I must admit I am a bit conce...

•8 years ago

Exasperation with consultants AGAIN

Good afternoon my MPN family. I went to the consultant yesterday for results of my MRI scan on my brain (they found one by the way and everything was okay)....

Good afternoon my MPN family. I went to the consultant yesterday for results of...

•8 years ago

MPN Voice patients forum at The Christie

Is anyone else from West Yorkshire going to the forum?

Is anyone else from West Yorkshire going to the forum?

•8 years ago

Angrylide side effects good or bad

My local Hemo has prescribed AG as HU did not work for me and before he goes to pegasy which you have to go through a whole bunch of red tape in the US, he...

My local Hemo has prescribed AG as HU did not work for me and before he goes to ...

•8 years ago

Appointment

Well, here we are again - the four monthly appointment with my specialist nurse. My sister has thrombocythemia and me PV and today we have arranged our...

Well, here we are again - the four monthly appointment with my specialist nurse...

•8 years ago

Using natural therapy over hu

Hi I have been on hu and coversil for 7 years no side effects but worried about long term usage. Has anyone been on and sopped to use natural therapy? would...

Hi I have been on hu and coversil for 7 years no side effects but worried about ...

•8 years ago

low blood pressure

I am 65 and diagnosed with ET/Jak2+ in February with platelets at 924. I have been on Hydroxicarbamide (x3/day) and asprin until last week when haematologist...

I am 65 and diagnosed with ET/Jak2+ in February with platelets at 924. I have be...

•8 years ago

Feeling faint

Good morning all. Four more days in Ireland then back home to the USA. I am going to try to have my HGB checked before our nearly 8 hour flight. Always...

Good morning all. Four more days in Ireland then back home to the USA. I am goin...

•8 years ago

My journey back to health

Keeping my condition under control through discipline and diet is a journey I have been on for more than 3 years. I was diagnosed with PV in May 2013 and...

Keeping my condition under control through discipline and diet is a journey I ha...

•8 years ago

I did it!

This morning my final grade came through the post and I achieved "The highest grade of distinction with an outstanding overall mark of 96%". I will be...

This morning my final grade came through the post and I achieved "The highest gr...

•8 years ago

Over whelmed I am .

Just want to share my joy , I was moved to tears to hear that my good neighbor is having a charity evening for MPN voice (for ME ) unbelievable I'm extatic...

Just want to share my joy , I was moved to tears to hear that my good neighbor ...

•8 years ago

severe 'blushing'

Is there anyone out there who has the same symptom? It comes and goes and my face goes very red indeed. there seems no reason to account for it (I am not...

Is there anyone out there who has the same symptom? It comes and goes and my fa...

•8 years ago

I'm not new here ,,I'm twinkly !

Just home from clinic ,. Surgery check from March .excellent results ,surprised the team .no scarring to be seen on my major gut surgery .i continued to take...

Just home from clinic ,. Surgery check from March .excellent results ,surprised ...

•8 years ago

Boasting About My Sister

Although her efforts were not directly for MPN Voice - but the MPN 'family' will benefit all the same - my sister has just completed a series of sponsored...

Although her efforts were not directly for MPN Voice - but the MPN 'family' will...

•8 years ago

HAPPINESSISNOWHERE - what does that say?

This is an interesting psychological experiment. A quick glance and what does it say?? I will give more info after more people have answered. I don't want to...

This is an interesting psychological experiment. A quick glance and what does it...

•8 years ago

Home visit for PIP

Eeeeeh, I have just received my brown PIP envelope regarding my consultation with a health professional which is for next Tuesday, June 7, at my House? Anyone...

Eeeeeh, I have just received my brown PIP envelope regarding my consultation wit...

•8 years ago

Anyone keep getting a pyrexia?

At 45, have ET, and I've been putting my steadily increasing hot flushes down to the menopause. My periods stopped over 6 years ago. However, 'they' don't...

At 45, have ET, and I've been putting my steadily increasing hot flushes down t...

•8 years ago

Why am i feeling like I am living in the Artic?

If you would see me now you would laugh your socks off. I have fingerless gloves on, a shawl around my shoulders and a blanket across my knees. I keep going...

If you would see me now you would laugh your socks off. I have fingerless glove...

•8 years ago

Not a pretty pic but.......

Apologies for the picture! As you can see I have an infected toe, I've had a week on antibiotics but it's no better, worse in fact, my GP says he doesn't think...

Apologies for the picture! As you can see I have an infected toe, I've had a wee...

•8 years ago

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