Posts - MPN Voice | HealthUnlocked

MPN Voice

10,439 members • 14,387 posts

All posts for July 2017

Itchy and bitchy!

Hi Guys, does anyone else experience variations on how itchy your skin gets? My blood counts are fine so I can't blame them, I'm drinking plenty of fluids and...

Hi Guys, does anyone else experience variations on how itchy your skin gets? My...

Aime

•7 years ago

12 Replies

Current care at local hospital

Hi been under my local heomotoligist and feel I'm not getting the care or advise I need. I wrote him a letter asking if I could be seen at Guys and St Thomas...

Hi been under my local heomotoligist and feel I'm not getting the care or advise...

sjdard

•7 years ago

7 Replies

New diagnosed Question

Hi All, I have been diagnosed JAK2+ MPN in the last few weeks. I was getting pain in my fingers and toes and dizzy spells and a blood test showed my red cells...

Hi All, I have been diagnosed JAK2+ MPN in the last few weeks. I was getting pai...

Joerp

•7 years ago

11 Replies

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To BMB or not? And can I request one?

Hi everyone. I was diagnosed in February this year after extensive blood tests, following a massive post op bleed. I'd had a knee arthroscopy due to a badly...

Hi everyone. I was diagnosed in February this year after extensive blood tests,...

Hidden

•7 years ago

15 Replies

Newly diagnosed

Hi i've recently been diagnosed with ET after routine pre op bloods. My surgery was on hold until they foundthe cause of my high platelets. 7monthd on i had...

Hi i've recently been diagnosed with ET after routine pre op bloods. My surgery ...

ladydriva

•7 years ago

8 Replies

Celiac Artery Stenosis/Splenic Artery Aneurysm with ET - anyone else? ...

Morning all, I have posted on here a few times and read all your posts daily. I am struggling at the minute with this illness. Brief background - 46 years old...

Morning all, I have posted on here a few times and read all your posts daily. I ...

Janlol

•7 years ago

9 Replies

Pegagey

Hello! I've had an awful few week's with stomach trouble but Monday evening after having one of my husband''s special omelette I had a reaction my top lip...

Hello! I've had an awful few week's with stomach trouble but Monday evening afte...

linphy

•7 years ago

9 Replies

Out fight Together..

We are unique !! We have each other here though..I feel like we are not alone here.We are a family of sorts, sisters and brothers here helping each other...

We are unique !! We have each other here though..I feel like we are not alone he...

IlGod67

•7 years ago

5 Replies

Elizabeth368 I'm on hydrea for platelets. They were coming down but now their at a stand still. At 575 they won't them under 400 but not yet

I've been taking hydrea for 2 years my heart now skips beats. Anyone else with this problem? Thank you for letting me join your group.

I've been taking hydrea for 2 years my heart now skips beats. Anyone else with t...

Elizabeth368

•7 years ago

4 Replies

Whey protein

I use protein drinks after training Any thoughts on this with ET jack2 Told it may thin your blood and reduce blood pressure

I use protein drinks after training Any thoughts on this with ET jack2 Told it...

Bakkenist

•7 years ago

2 Replies

Pains in Legs

Hi All My husband has myloefibrosis and is waiting to go into hospital for an iron infusion as he is very aneamic. He has been suffering with cellulitis with...

Hi All My husband has myloefibrosis and is waiting to go into hospital for an ir...

Hidden

•7 years ago

5 Replies

ET and taking iron supplements

Hi all Not posted or really been on site for a while as my partner has been quite ill and he has had to have surgery. He is on mend thankfully. I hope everyone...

Hi all Not posted or really been on site for a while as my partner has been quit...

Hidden

•7 years ago

14 Replies

Fasciitis plantaris in Pegasys users .

I have become curious :) Some time ago I wrote a post complaining about pain in heel and arch. Many kind people suggested "Fasciitis plantaris" as reason-- and...

I have become curious :) Some time ago I wrote a post complaining about pain in ...

yarrowleaf

•7 years ago

14 Replies

First time post

Good morning everybody just a quick post to introduce myself I am "Jillydabrats " husband I am the lucky one ,fortunately I do not have PV . But I do know how...

Good morning everybody just a quick post to introduce myself I am "Jillydabrats ...

Stefandjill

•7 years ago

3 Replies

MPN Voice Patients’ Forum – Birmingham. Friday 6th October 2017, 12.30 – 4 pm, registration and buffet lunch 12 – 12.30 pm

Suite 7, Fazeley Studios, 191 Fazeley Street, Digbeth, Birmingham, B5 5SE Programme The programme is yet to be finalized, but will include talks...

Suite 7, Fazeley Studios, 191 Fazeley Street, Digbeth, Birmingham, B5 5SE Progra...

Mazcd

Partner•7 years ago

Be the first to reply

MPN Voice Patients’ Forum – Inverness. Friday 8th September, 10 am - 2 pm, registration 9.30 – 10 am

Eden Court Theatre, Bishops Road, Inverness, IV3 5SA The forum will be held in The MacLean Room Programme The programme is yet to be finalized,...

Eden Court Theatre, Bishops Road, Inverness, IV3 5SA The forum will be held in ...

Mazcd

Partner•7 years ago

Be the first to reply

Jakavi and Valaciclovir

A couple of months ago my Jakavi treatment was reduced down to 5mg bid and the consultant stopped my Valaciclovir anti-viral treatment. This week my consultant...

A couple of months ago my Jakavi treatment was reduced down to 5mg bid and the c...

crapaud

•7 years ago

6 Replies

I'm new here

Hello! This is my first time signing in. I was diagnosed with Essential Thrombocythemia several years ago and since then have been diagnosed with...

Hello! This is my first time signing in. I was diagnosed with Essential Thromb...

fran57paul

•7 years ago

25 Replies

New puppy

Nothing like a new puppy to take your mind off your MPN. This is Teddy, he's a Shih Tzu and is now 12 weeks old. I've had him for 4 weeks and he is one...

Nothing like a new puppy to take your mind off your MPN. This is Teddy, he's a ...

piggie50

•7 years ago

23 Replies

blocked ear

hi louisev maybe a visit to the doctor would it may be that you need your ears syringed the ringing in your ear sounds like tinnitus but whatever it is I hope...

hi louisev maybe a visit to the doctor would it may be that you need your ears s...

Scottishterrier

•7 years ago

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Blocked ear

For the past 6 days I have been suffering with a blocked left ear. I have tried using cotton buds, almond oil and water but my ear is still blocked and I can't...

For the past 6 days I have been suffering with a blocked left ear. I have tried ...

Louiseburns316

•7 years ago

8 Replies

Gastritis

Hi not sure if anyone can help. I have ET Jak 2 +. I was diagnosed 8 years ago and am on 500 Hyderabad daily and aspirin. I have Barrett's Osoephagus and...

Hi not sure if anyone can help. I have ET Jak 2 +. I was diagnosed 8 years ago a...

Margo18

•7 years ago

2 Replies

Mouth Ulcers

I've had ET for a couple of years, take 1gm Hydrea daily. I am getting horrendous mouth ulcers, often 3 or 4 at a time. The Haematologist has tried lowering my...

I've had ET for a couple of years, take 1gm Hydrea daily. I am getting horrendou...

Bakerlite

•7 years ago

8 Replies

Worried about my memory

Ever since I was diagnosed with PV 18 months ago I have had ever increasing memory problems. I won't talk to anyone on the phone because I can't find the...

Ever since I was diagnosed with PV 18 months ago I have had ever increasing memo...

jillydabrat

•7 years ago

17 Replies

Fun day in Egham please support this event!!!!

Through my Harley Davidson bike club we are doing a fun day next Saturday on 22 July in Egham. All the money raised will be for MPN voice for rare blood...

Through my Harley Davidson bike club we are doing a fun day next Saturday on 22 ...

softail

•7 years ago

9 Replies

Polycythemia Jak gene negative

I was diagnosed with Polycythemia about 6 weeks ago after routine blood tests to explain my leg pains,fuzzy heads,frequent toilet visits,tingling of leg feet...

I was diagnosed with Polycythemia about 6 weeks ago after routine blood tests to...

Anniemorris

•7 years ago

3 Replies

Does this sound like PV?

Hi, been dealing with what was thought to be a rheumatological disorder and just have not gotten a diagnosis. Saw a specialist in Seattle and she wanted a...

Hi, been dealing with what was thought to be a rheumatological disorder and just...

trc1962

•7 years ago

4 Replies

Travel Insurance

My travel insurance is due for renewal and the company i'm with, 'Insurance With' have doubled the cost from £300 to £600 for the next twelve months although...

My travel insurance is due for renewal and the company i'm with, 'Insurance With...

dave117

•7 years ago

7 Replies

low Grade Fever and MPN

Is low grade fever a symptom of MPN? I had one about a month ago and was sick with what I thought was a flu. A month later I have another fever but I did...

Is low grade fever a symptom of MPN? I had one about a month ago and was sick w...

Sklines

•7 years ago

3 Replies

Any one know anything about curcumin supplements?

Hello all I've come across a fair few articles in the main stream press about curcmin supplements - (Curcumin being the active ingredient in the spice...

Hello all I've come across a fair few articles in the main stream press about cu...

christiev

•7 years ago

19 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2017

Itchy and bitchy!

Current care at local hospital

New diagnosed Question

To BMB or not? And can I request one?

Newly diagnosed

Celiac Artery Stenosis/Splenic Artery Aneurysm with ET - anyone else? ...

Pegagey

Out fight Together..

Elizabeth368 I'm on hydrea for platelets. They were coming down but now their at a stand still. At 575 they won't them under 400 but not yet

Whey protein

Pains in Legs

ET and taking iron supplements

Fasciitis plantaris in Pegasys users .

First time post

MPN Voice Patients’ Forum – Birmingham. Friday 6th October 2017, 12.30 – 4 pm, registration and buffet lunch 12 – 12.30 pm

MPN Voice Patients’ Forum – Inverness. Friday 8th September, 10 am - 2 pm, registration 9.30 – 10 am

Jakavi and Valaciclovir

I'm new here

New puppy

blocked ear

Blocked ear

Gastritis

Mouth Ulcers

Worried about my memory

Fun day in Egham please support this event!!!!

Polycythemia Jak gene negative

Does this sound like PV?

Travel Insurance

low Grade Fever and MPN

Any one know anything about curcumin supplements?

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