Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for August 2018

Hi I’m new to the forum - ET JAK 2 Negative - waiting on the results for a second BMB to exclude Pre - Fibrotic MF

Hi all and thank you Maz for accepting me onto the forum. I do wish I had come across you when I was first diagnosed back in 2008. I’m sure it would have...

Hi all and thank you Maz for accepting me onto the forum. I do wish I had come ...

SP-2008

•6 years ago

17 Replies

Low oxygen level in blood

Iam jak2 and exon12 neg.Wondering if my high RBC hct count is due to some secondary reason.Went for sleep study 2 days back.Reports are still to come.The guy...

Iam jak2 and exon12 neg.Wondering if my high RBC hct count is due to some second...

Hidden

•6 years ago

16 Replies

Is this dementia?

I'm 62, getting heart palputations, 16 1/2 stone, have loss weight before should be able to do it again, never been a healthy bunny, permanently tired, now...

I'm 62, getting heart palputations, 16 1/2 stone, have loss weight before should...

Adlon57

•6 years ago

6 Replies

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Good General Practioner

New here and have PV for about 14 months. I live in Central Florida and the insurance is not the greatest but lucky to have something. The problem is not...

New here and have PV for about 14 months. I live in Central Florida and the insu...

Alex9621

•6 years ago

2 Replies

Twisted bowel

I have been in and out of hospital four times in July and seven times in the past year Is this normal

I have been in and out of hospital four times in July and seven times in the pas...

Gingercrusher5

•6 years ago

7 Replies

PV and research into the Endocannabinoid System

Any others with PV who are finding out about the wide-ranging scientific research about Cannabidiol (CBD) Oil and its effective treatment for modern diseases...

Any others with PV who are finding out about the wide-ranging scientific researc...

reliabletony

•6 years ago

7 Replies

Could it be spleen pain

Been struggling with left side stomach pain for over a week now, seem to hurt more when eating. Could my spleen be enlarged. Also struggling with breathing,...

Been struggling with left side stomach pain for over a week now, seem to hurt mo...

sjdard

•6 years ago

5 Replies

Can't remember 😢

Can someone let me know how to reply and post, can't seem to work it out anymore.☹️ Thank you😳

Can someone let me know how to reply and post, can't seem to work it out anymore...

Angelinagaffer

•6 years ago

4 Replies

has anyone had a hip replacement with polycythaemia

I have polycythaemia vera primary

leapi

•6 years ago

21 Replies

More research

https://youtu.be/XhEwj6Ue13s

Kelly2

•6 years ago

4 Replies

Just diagnosed with prv jak2 confirmed

Hi everyone, I live in the UK and male aged 54. Confirmed with primary polycythamia Vera I have the jak2 gene . I take 1 hydroxy. Tablet every other day with...

Hi everyone, I live in the UK and male aged 54. Confirmed with primary polycytha...

john0084

•6 years ago

10 Replies

Still in hospital, now worse than before visiting A&E

My wife was sent to A&E on the 23rd July after being discharged on the 14th July when she already had a distended abdomen from what we now know was a portal...

My wife was sent to A&E on the 23rd July after being discharged on the 14th July...

jointpain

•6 years ago

6 Replies

Patient Power

I have posted before about peoples' opinion and/or usefulness about now Patient Power. What has alarmed me having just read one of their forums is" cognitive...

I have posted before about peoples' opinion and/or usefulness about now Patient ...

Garden987

•6 years ago

14 Replies

A lovely surprise

JUst a little joy for me today. Have put my house on the market and as it was "open"day went out for two hours with my daughter. Felt totally exhausted as...

JUst a little joy for me today. Have put my house on the market and as it was "...

Garden987

•6 years ago

5 Replies

WATER A novel and delicious way to drink 2 litres of water daily.

Hello All I am not a keen drinker of water but I do know how important it is for our health. So I have come up with a novel way that helps me drink lots of it...

Hello All I am not a keen drinker of water but I do know how important it is for...

Hidden

•6 years ago

5 Replies

‘reasonable adjustment’ at work?

Morning all Has anyone got and experience or advice on ‘reasonable adjustment’ at work? I work full time but am struggling with symptoms on a daily basis...

Morning all Has anyone got and experience or advice on ‘reasonable adjustment’ a...

SuET2017

•6 years ago

25 Replies

MPN and Nueopathy

Anybody associate MPN with neuropathic pain? I get terrible burning nerve pain in my feet. ET JAK2+ 72 years old.

Anybody associate MPN with neuropathic pain? I get terrible burning nerve pain ...

Jerrymohler

•6 years ago

8 Replies

Is anyone been diagnosed with acute Leukemia

I went for a bone biopsy and the doctor thinks I might have it please let me how you’re dealing with it

I went for a bone biopsy and the doctor thinks I might have it please let me how...

Chil67

•6 years ago

8 Replies

Bruised but not dented

Hi my MPN friends, just thought I would let you see one of many bruises from a silly accident I had at the weekend. Climbed onto a garden bench to try to see...

Hi my MPN friends, just thought I would let you see one of many bruises from a s...

Superwoman

•6 years ago

46 Replies

TAMARIN STUDY now open across the UK in 13 hospitals

TAMARIN STUDY The TAMARIN study is a very exciting study based on UK science and is now open in 13 hospitals across the UK. The study is a multicentre...

TAMARIN STUDY The TAMARIN study is a very exciting study based on UK science and...

Mazcd

Partner•6 years ago

3 Replies

Two more patients' forums confirmed - Manchester and Glasgow

Two more forums are confirmed Manchester – Saturday 22nd September 2018 full details...

Two more forums are confirmed Manchester – Saturday 22nd September 2018 full de...

Mazcd

Partner•6 years ago

Be the first to reply

QUALITY OF LIFE

I am male, 74, have ET & jak 2+ and been taking 17 Hu for 5 years now. I do like a good rant and I guess this is the place. The blasted Hu has made my skin...

I am male, 74, have ET & jak 2+ and been taking 17 Hu for 5 years now. I do like...

ashby6708

•6 years ago

48 Replies

How long do BMB results take?

I just wondered if anyone knows how long bone marrow biopsy results take? I had my BMB on 24th of July, and my results appointment is 20th September.

I just wondered if anyone knows how long bone marrow biopsy results take? I had ...

Sarahjane100

•6 years ago

9 Replies

ET, Lower Hydroxycarbamide

Afternoon everyone, seen my consultant today, platelets are down to 386. Consultant was pleased doesn't want to see me until October. I was put back on...

Afternoon everyone, seen my consultant today, platelets are down to 386. Consult...

linphy

•6 years ago

8 Replies

Haemoglobin level in polycythemia vera

Does anyone know what a normal haemoglobin level is? My hb count on my last hospital letter was 130. Just wondered what that meant. I am waiting for bone...

Does anyone know what a normal haemoglobin level is? My hb count on my last hosp...

Sarahjane100

•6 years ago

5 Replies

Low dose aspirin: ineffective above 70kg

Just heard an interesting piece on Radio 4, saying that new research shows 75mg aspirin is ineffective at preventing strokes if you are over 70kg. One...

Just heard an interesting piece on Radio 4, saying that new research shows 75mg ...

rdevans

•6 years ago

9 Replies

Pregnancy and jak2 et MPN

I know I’ve posted about this in the past but it’s been a while. I’m curious to know the successful and unsuccessful pregnancy stories? I am almost 28 yrs old...

I know I’ve posted about this in the past but it’s been a while. I’m curious to ...

Cathy426

•6 years ago

3 Replies

Inflammation, symptom or not?

I was diagnosed with ET 4 1/2 years ago with JAK2+ and BMB showed mild fibrosis. I'll be getting a second opinion this year but was curious if others have...

I was diagnosed with ET 4 1/2 years ago with JAK2+ and BMB showed mild fibrosis....

Devrob71

•6 years ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2018

Hi I’m new to the forum - ET JAK 2 Negative - waiting on the results for a second BMB to exclude Pre - Fibrotic MF

Low oxygen level in blood

Is this dementia?

Good General Practioner

Twisted bowel

PV and research into the Endocannabinoid System

Could it be spleen pain

Can't remember 😢

has anyone had a hip replacement with polycythaemia

More research

Just diagnosed with prv jak2 confirmed

Still in hospital, now worse than before visiting A&E

Patient Power

A lovely surprise

WATER A novel and delicious way to drink 2 litres of water daily.

‘reasonable adjustment’ at work?

MPN and Nueopathy

Is anyone been diagnosed with acute Leukemia

Bruised but not dented

TAMARIN STUDY now open across the UK in 13 hospitals

Two more patients' forums confirmed - Manchester and Glasgow

QUALITY OF LIFE

How long do BMB results take?

ET, Lower Hydroxycarbamide

Haemoglobin level in polycythemia vera

Low dose aspirin: ineffective above 70kg

Pregnancy and jak2 et MPN

Inflammation, symptom or not?

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