Posts - MPN Voice | HealthUnlocked

MPN Voice

10,426 members • 14,368 posts

All posts for October 2013

Skull shape Changes

Hi all, I am not sure if I am going a bit batty, but I think that my skull is changing shape, with bumps and ledges that I am sure were not there before....

Hi all, I am not sure if I am going a bit batty, but I think that my skull is ch...

Chrissie10

•10 years ago

44 Replies

The biggest compliment ever received!

"You know, somebody actually complimented me on my driving today. They left a little note on the windscreen; it said 'Parking Fine.' So that was nice."

"You know, somebody actually complimented me on my driving today. They left a...

Geoff_mpnfamily

•10 years ago

6 Replies

Sorry guys only meant to post the once about op

However the website had other ideas. I thought first post hadn't gone through but it obviously had!! Regards Aime x

However the website had other ideas. I thought first post hadn't gone through b...

Aime

•10 years ago

1 Reply

Want to take advantage of all our features? Just log in!

Op number 1

Hi Guys, just to let you know I won't be on the forum for a few days as I get my shoulder op tomorrow - at least bloods are behaving at the moment. I hope you...

Hi Guys, just to let you know I won't be on the forum for a few days as I get my...

Aime

•10 years ago

7 Replies

Op number 1

Hi guys, just to let you know I will be off the forum for a short while as I get my shoulder op tomorrow. At least the bloods are behaving - at the moment....

Hi guys, just to let you know I will be off the forum for a short while as I get...

Aime

•10 years ago

2 Replies

A short joke.

A woman took her dog to the vet. She said, "I think my dog is dead". The doctor laid the dog on the table and reached down and took a cat out of a box. The cat...

A woman took her dog to the vet. She said, "I think my dog is dead". The doctor ...

Geoff_mpnfamily

•10 years ago

3 Replies

PV and breathlesness

I've had PV for 5 years and managed by venesections and aspirin. My bloods are all OK for me. In the past when my GP did a blood test he thought my body was...

I've had PV for 5 years and managed by venesections and aspirin. My bloods are ...

mark382

•10 years ago

14 Replies

Originally shared by Kathygwanny on British Lung Foundation I thought u might like this joke.

Mary received a parrot as a gift. The parrot was fully grown with a very bad attitude and worse vocabulary. Every other word was profanity; those that weren't...

Mary received a parrot as a gift. The parrot was fully grown with a very bad att...

Geoff_mpnfamily

•11 years ago

13 Replies

Charity Christmas Cards in aid of MPD/N Voice

Support MPD/N Voice this Christmas by sending our charity Christmas cards, there are 5 designs available, The Tree, Holy Mother, A Walk in the Snow, Holly and...

Support MPD/N Voice this Christmas by sending our charity Christmas cards, there...

Mazcd

Partner•11 years ago

4 Replies

Does anyone with PRV suffer from red, swollen face (definitely can't be described as "ruddy complexion", more than that)

Have suffered from this for last four days. Face very red, itchy, hot to touch,swollen and although skin doesn't look lumpy you can feel lumps under the skin....

Have suffered from this for last four days. Face very red, itchy, hot to touch,...

sand-bog

•11 years ago

14 Replies

Hi guys. I am moving home and my nearest hospital will be Broomfield Essex. Can anyone tell me if it's any good? I have PV. Thank you Mel x

harleydavidson

•11 years ago

6 Replies

DDA

Hello, Does anyone know if ET is covered by the disability discrimination act. I was recently turned down for an internal job because my sickness record was...

Hello, Does anyone know if ET is covered by the disability discrimination act. I...

stevenjust

•11 years ago

10 Replies

Anyone have days when you feel tired from the minute you wake up ?

rubyrubyruby

•11 years ago

18 Replies

Does anyone, suffering from ET, have constant headaches? If so, what is being advised, what is helpful?

I am 72. Interestingly, mother had PV but told never handed down from mother to daughter....ET same mpd family but strange coincidence! Has anyone out there...

I am 72. Interestingly, mother had PV but told never handed down from mother to ...

Tinkerbell13

•11 years ago

46 Replies

PV with increasing stiff and crunchy joints

I was diagnosed wit PV in 2011 I am lucky enough to have a brilliant haematologist so I am now very stable . The symptom that led to the discovery of my PV was...

I was diagnosed wit PV in 2011 I am lucky enough to have a brilliant haematologi...

marieowens

•11 years ago

6 Replies

Hi I have et and am on interferon a. I was diagnosed with breast cancer, had a right breast Mastectomy and a week later had a tia which is

thought to be caused by my blood becoming sticky during op, cancer was found in the sentel node that was removed but I can't have another op due to it being...

thought to be caused by my blood becoming sticky during op, cancer was found in...

josiede

•11 years ago

9 Replies

Does cone shaped breast / PECK mean I have something to worry about?

hi all, I don't know why it's hard for us men to speak about this (but it is and annoying) should I seek medical advice for an uncomfortable cone shaped peck....

hi all, I don't know why it's hard for us men to speak about this (but it is and...

Geoff_mpnfamily

•11 years ago

6 Replies

It's not really an issue in the great scheme of things, but does anyone know if it's ok to dye my hair whilst taking Hydroxicarbamide?

piggie50

•11 years ago

7 Replies

Is there anyone with PRV on HealthUnlocked living in Australia?

I came across this website after being diagnosed with PRV and talking to someone in the UK who also has PRV. It is obviously a website that originated in the...

I came across this website after being diagnosed with PRV and talking to someone...

sand-bog

•11 years ago

20 Replies

Constant Headache and blood pressure has gone up - do you think my Hct levels are rising

Hi all I do not get to see the consultant again till mid November and not had venesection since mid July which will be about 16 weeks. Last time the gap...

Hi all I do not get to see the consultant again till mid November and not had ve...

Chrissie10

•11 years ago

13 Replies

What other resources / forums apart from MPDvoicehealthunlocked do people find useful for information about MPN's ?

ETphonehome

•11 years ago

4 Replies

I have recently been diagnosed with polycythemia so far tests have confirmed I am JAK 2 negative, at 36 chances of being relitive or true?

At 36 as a smoker who likes a drink what is likelihood of being relitive or true condition, may not be answer but feeling stressed and confused and tired,...

At 36 as a smoker who likes a drink what is likelihood of being relitive or true...

Crimiknell

•11 years ago

12 Replies

What is the possible end of life scenario for sufferers of myelo fibrosis?

My mother has myelo fibrosis. She was diagnosed 13 years ago. She has had regular blood transfusions for the past three years. She is getting weaker and is...

My mother has myelo fibrosis. She was diagnosed 13 years ago. She has had regula...

shukar786

•11 years ago

4 Replies

my dad has had myelofibrosis for the last 5 yrs and in the consultants opinion has now progressed to Accute Myeloid Leukemia.

I just wondered if anyone has any knowledge of this or maybe a relative in the same situation.

I just wondered if anyone has any knowledge of this or maybe a relative in the s...

rosie57

•11 years ago

2 Replies

Husband 3 months in polycaethemia vera on Hydera and aspirin only. Now getting pins and needles in arms, anyone else had anything similar

Is this just the pvr or side effect of hydrea

Headinthesand

•11 years ago

12 Replies

Ruxolitinib trial

I've been on Ruxolitinib Relief trial now for nine weeks . This morning got a call from the research nurse . I've got to recon sent due to new information ....

I've been on Ruxolitinib Relief trial now for nine weeks . This morning got a ca...

maestromaverick

•11 years ago

6 Replies

Hi Been diagnosed with Pv this year after months of tests. Have had really bad muscle and joint pain for the last couple of months

spoke to my consultant about these pains and he is going to refer me to a rheumatologist has anyone else been referred to a rheumatologist and if so what sort...

spoke to my consultant about these pains and he is going to refer me to a rheuma...

sparko35

•11 years ago

6 Replies

Does anyone know if having ET makes one more susceptible to strokes/heart attacks even when the platelets are well controlled?

Mwalimu

•11 years ago

5 Replies

I Have a High Red Cell Blood Count,Have Been Having a Venesection For This And Feel Good After It! Now The Consultant Is Asking Me If I

Would Like /Prefer To Take Hydroxycarbamide! I'm Undecided,As There Seems To Be Side Affects With It! What Do You Think?

Would Like /Prefer To Take Hydroxycarbamide! I'm Undecided,As There Seems To Be ...

Malaga88

•11 years ago

10 Replies

Allopurinol: anyone know whether there is any point in taking this if your bloods are OK?

I have PV and am on aspirin and hydroxy. Was prescribed allopurinol a couple of years ago as a permanent drug to prevent future gout - my haem does this for...

I have PV and am on aspirin and hydroxy. Was prescribed allopurinol a couple of ...

jane13

•11 years ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2013

Skull shape Changes

The biggest compliment ever received!

Sorry guys only meant to post the once about op

Op number 1

Op number 1

A short joke.

PV and breathlesness

Originally shared by Kathygwanny on British Lung Foundation I thought u might like this joke.

Charity Christmas Cards in aid of MPD/N Voice

Does anyone with PRV suffer from red, swollen face (definitely can't be described as "ruddy complexion", more than that)

Hi guys. I am moving home and my nearest hospital will be Broomfield Essex. Can anyone tell me if it's any good? I have PV. Thank you Mel x

DDA

Anyone have days when you feel tired from the minute you wake up ?

Does anyone, suffering from ET, have constant headaches? If so, what is being advised, what is helpful?

PV with increasing stiff and crunchy joints

Hi I have et and am on interferon a. I was diagnosed with breast cancer, had a right breast Mastectomy and a week later had a tia which is

Does cone shaped breast / PECK mean I have something to worry about?

It's not really an issue in the great scheme of things, but does anyone know if it's ok to dye my hair whilst taking Hydroxicarbamide?

Is there anyone with PRV on HealthUnlocked living in Australia?

Constant Headache and blood pressure has gone up - do you think my Hct levels are rising

What other resources / forums apart from MPDvoicehealthunlocked do people find useful for information about MPN's ?

I have recently been diagnosed with polycythemia so far tests have confirmed I am JAK 2 negative, at 36 chances of being relitive or true?

What is the possible end of life scenario for sufferers of myelo fibrosis?

my dad has had myelofibrosis for the last 5 yrs and in the consultants opinion has now progressed to Accute Myeloid Leukemia.

Husband 3 months in polycaethemia vera on Hydera and aspirin only. Now getting pins and needles in arms, anyone else had anything similar

Ruxolitinib trial

Hi Been diagnosed with Pv this year after months of tests. Have had really bad muscle and joint pain for the last couple of months

Does anyone know if having ET makes one more susceptible to strokes/heart attacks even when the platelets are well controlled?

I Have a High Red Cell Blood Count,Have Been Having a Venesection For This And Feel Good After It! Now The Consultant Is Asking Me If I

Allopurinol: anyone know whether there is any point in taking this if your bloods are OK?

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive