Posts - MPN Voice | HealthUnlocked

MPN Voice

10,409 members • 14,354 posts

All posts for July 2020

shodaguy feeling great right now

I have had MPN for 26 years with a variety of diagnosis. I have had PV followed by CML then now MF. About 2 years ago I had my bike electrified. I have been...

I have had MPN for 26 years with a variety of diagnosis. I have had PV followed...

skodaguy

•4 years ago

11 Replies

shortness of breath

Hi everyone, I have PV. I'm noticing for the last few months that I've been feeling just a bit out of breath and speaking more slowly sometimes...

Hi everyone, I have PV. I'm noticing for the last few months that I've been fee...

souplover

•4 years ago

21 Replies

Memory Foam Mattress is unbearably hot.

What kind of mattress do you have? It is has been extremely hot here the past few days and as a result I am getting the dreaded itchy feeling up and down my...

What kind of mattress do you have? It is has been extremely hot here the past f...

lebowski42

•4 years ago

22 Replies

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Charities Calling For Employment Protections For Shielding

Coronavirus: 'Chancellor must protect' jobs of those shielding https://www.bbc.co.uk/news/business-53602276 Hopefully this is going in the right direction for...

Coronavirus: 'Chancellor must protect' jobs of those shielding https://www.bbc.c...

Jenny_F

•4 years ago

Be the first to reply

Interesting article

An unusual story of success . (Very!) Looking forward to to your comments !!...

Mostew

•4 years ago

34 Replies

Sensitive skin?

PV, JAK2+, Pegasys 45 weekly Anyone ever deal with migrating skin sensitivity? It’s the weirdest thing - over the past several days my skin has gotten crazy...

PV, JAK2+, Pegasys 45 weekly Anyone ever deal with migrating skin sensitivity? I...

JT_Marlin

•4 years ago

3 Replies

Sarcoma and my daughter

Evening my fellow MPNs Not sure if you remember I spoke about my daughter having Parosteal Osteosarcoma, again another very rare cancer like ours about seven...

Evening my fellow MPNs Not sure if you remember I spoke about my daughter havin...

Superwoman

•4 years ago

27 Replies

Anyone know of links between MPN’s and working on military radars?

Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the discovery I was fit and healthy. I understood that MPN’s were rare and...

Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the...

MadamCholet1

•4 years ago

15 Replies

For socrates_8

As you requested Some of the fabrics I’ve used for masks. Don’t know how to add a photo to replies to posts 😁😷 every scrap of Star Wars and Disney material...

As you requested Some of the fabrics I’ve used for masks. Don’t know how to add ...

lizzziep

•4 years ago

9 Replies

PV itch

Hi, sorry to keep going on about it, but has anyone used Aloe Vera for “the itch” and does it help ? A friend has recommended it may help 🤔 Thanks 💞

Hi, sorry to keep going on about it, but has anyone used Aloe Vera for “the itch...

Yvette49

•4 years ago

17 Replies

REMINDER for the Virtual MPN Voice Patients’ Forum – London Saturday 1st August

Have you registered for the virtual MPN Voice Patients’ Forum, being streamed live online on Saturday 1st August 2020 10 am – 1 pm (BST)? If you haven’t...

Have you registered for the virtual MPN Voice Patients’ Forum, being streamed li...

Mazcd

Partner•4 years ago

11 Replies

25 with ET

Hello all, I am new here. I am 25, got diagnosed with ET with JAK2 mutation positive. The funny part is I am doctor myself, just got my general physician...

Hello all, I am new here. I am 25, got diagnosed with ET with JAK2 mutation posi...

DoctorWithET

•4 years ago

69 Replies

MASK DEBATE RAGES ON... WHY?

Post by MPN-MATE Admin » Tue Jul 28, 2020 7:49 pm Evening all... :D I guess that no one, (including myself), should really be surprised to learn that the...

Post by MPN-MATE Admin » Tue Jul 28, 2020 7:49 pm Evening all... :D I guess t...

socrates_8

•4 years ago

14 Replies

JAK2 Allele burden 17%

Got my NGS results. they found only JAK2 mutation. Allele burden 17%, what does it means? First i got diagnose Pre-MF or maybe it is ET..

Got my NGS results. they found only JAK2 mutation. Allele burden 17%, what does ...

littleluigi

•4 years ago

6 Replies

PV Help with Symptoms

I need some advice. I was diagnosed in Dec 2019. Since then all of my numbers have come down to normal and hematologists is pleased with phlebotomy and aspirin...

I need some advice. I was diagnosed in Dec 2019. Since then all of my numbers ha...

josup26

•4 years ago

7 Replies

Haematocrit

Hi all I haven't posted for a while but am interested how many have a high red blood count (HCT) when diagnosed with ET or MF Thanks in advance Graham

Hi all I haven't posted for a while but am interested how many have a high red b...

Graham7694

•4 years ago

10 Replies

Surgery Update2

Recovery for the surgery on the mandible continues to go well. My dentist offered to treat the incision with a low-level laser that stimulates the...

Recovery for the surgery on the mandible continues to go well. My dentist offe...

hunter5582

•4 years ago

30 Replies

Many many thanks for Replies Re: After 1st August

I am so grateful for all the replies from my fellow MPNers (24 up to now). I want to thank you all for your thoughts and how you are all dealing with our...

I am so grateful for all the replies from my fellow MPNers (24 up to now). I wan...

azaelea

•4 years ago

1 Reply

Increased meds

Hi all, An update, last September following a B.M.B. I was diagnosed pre M.F., up until this I was on daily Asprin and Venesection as needed. My Haemo decided...

Hi all, An update, last September following a B.M.B. I was diagnosed pre M.F., u...

redumbrella

•4 years ago

2 Replies

Exercise for elderly MPNers

I Have had ET for 16 years and am 79 years of age. I do like to try and keep fit but no longer have the energy to go to a gym. I know we are not allowed to...

I Have had ET for 16 years and am 79 years of age. I do like to try and keep fi...

Mufftreacs

•4 years ago

8 Replies

Serotonin as a therapeutic method for PV associated pruritis

Hi All, I came across this article and found it quite fascinating-perhaps some of us may benefit from SSRIs and/or Serotonin. Selective serotonin reuptake...

Hi All, I came across this article and found it quite fascinating-perhaps some ...

Mpncoda

•4 years ago

10 Replies

A week to go till 1st August

Hi everyone, what views have you once we are told we need not shield after next Saturday? I have been most careful since mid March and only gone for walks in...

Hi everyone, what views have you once we are told we need not shield after next ...

azaelea

•4 years ago

29 Replies

MPN ET Jak2+ HU Photo attached

Hello all I mentioned that over the past four years, at the same time I started Hydrea I gained much weight and that my eyes, mouth, skin and nose have changed...

Hello all I mentioned that over the past four years, at the same time I started ...

Hidden

•4 years ago

5 Replies

Has anyone experienced loss of collagen to the face muscles? Photo included

Another example of what has happened to my face during the past four years. It was the time I started taking Hydrea but it correlates with the time I became...

Another example of what has happened to my face during the past four years. It w...

Hidden

•4 years ago

6 Replies

Communication Problem

My user name is Townie and I have been a member of this ET group since 2017. I have been unable to comment to the group for about 18 months, or ever since the...

My user name is Townie and I have been a member of this ET group since 2017. I ...

Townie

•4 years ago

9 Replies

Flu Vaccine

Hi all, I’ve seen the (UK) government have expanded their flu vaccine programme for this coming winter. I was wondering if having an MPN would put me in an...

Hi all, I’ve seen the (UK) government have expanded their flu vaccine programme...

Rae25

•4 years ago

9 Replies

High platelet count

Hello, I am 43 years old and recently had a CBC that showed a high platelet count of 648. Everything else was in normal range, red, white, hemoglobin. I...

Hello, I am 43 years old and recently had a CBC that showed a high platelet co...

Jdb123

•4 years ago

8 Replies

Feel a Little bit Lonely and scared.

So im a 24year Old male. For a Year I have High hematocrit and hgb but I only New since New Year. I've had a mutation test and a ultra Sound back in january...

So im a 24year Old male. For a Year I have High hematocrit and hgb but I only N...

LorenzoDb

•4 years ago

7 Replies

Antibody Tests Through Post

Does anyone know of a way to get an antibody test for Covid-19 through the post?

Jenny_F

•4 years ago

14 Replies

Pain relief for knees

Hope everyone keeping ok well I've got a really bad flare up with oa in my knees at present I've got et jak2 positive my gp gave me steroid injections couple...

Hope everyone keeping ok well I've got a really bad flare up with oa in my knees...

Chel1

•4 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2020

shodaguy feeling great right now

shortness of breath

Memory Foam Mattress is unbearably hot.

Charities Calling For Employment Protections For Shielding

Interesting article

Sensitive skin?

Sarcoma and my daughter

Anyone know of links between MPN’s and working on military radars?

For socrates_8

PV itch

REMINDER for the Virtual MPN Voice Patients’ Forum – London Saturday 1st August

25 with ET

MASK DEBATE RAGES ON... WHY?

JAK2 Allele burden 17%

PV Help with Symptoms

Haematocrit

Surgery Update2

Many many thanks for Replies Re: After 1st August

Increased meds

Exercise for elderly MPNers

Serotonin as a therapeutic method for PV associated pruritis

A week to go till 1st August

MPN ET Jak2+ HU Photo attached

Has anyone experienced loss of collagen to the face muscles? Photo included

Communication Problem

Flu Vaccine

High platelet count

Feel a Little bit Lonely and scared.

Antibody Tests Through Post

Pain relief for knees

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