Posts - MPN Voice | HealthUnlocked

MPN Voice

10,414 members • 14,355 posts

All posts for May 2013

MPD Voice Summer Concert

Thursday 4th July 2013, 6.45 pm – 10.15 pm, the first MPD Voice Summer Concert will take place at the Savile Club, London W1. A host of fantastically gifted...

Thursday 4th July 2013, 6.45 pm – 10.15 pm, the first MPD Voice Summer Concert w...

Mazcd

Partner•11 years ago

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Change of hospital

Hello all, I have ET and have been under my current Drs/consultants at Queen Marys Sidcup for the last 3 years since diagnosis, I have recently been moved...

Hello all, I have ET and have been under my current Drs/consultants at Queen ...

stevenjust

•11 years ago

6 Replies

Long Term Illness

I live in Ireland and I was wondering if anyone had applied for a long term illness card? This would then allow me get the drugs I need for free. Presently I...

I live in Ireland and I was wondering if anyone had applied for a long term illn...

Irishmod

•11 years ago

7 Replies

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Has anyone enquired or actually taken (early) retirement with PV (or other MPD) ?

I enquired with my pension company a few weeks ago about the possibility of taking early retirement. Although they responded favourably (I'm 57 next month and...

I enquired with my pension company a few weeks ago about the possibility of taki...

KevinJH

•11 years ago

8 Replies

Is anyone out there a HGV (Heavy Goods Vehicle) driver?

Should I notify the DVLA (UK) to tell them about a MPN? If you have already done this what was the out come?

Should I notify the DVLA (UK) to tell them about a MPN? If you have already don...

Reflex4

•11 years ago

4 Replies

Run from the cure - the Rick Simpson story

I need to share with people what has happened with me, I have had PV for 2 years and been on hydroxy and venesections throughout I have suffered terrible...

I need to share with people what has happened with me, I have had PV for 2 years...

Gee1

•11 years ago

17 Replies

I have PV and am experiencing extreme weight loss. Anyone else had similar. If so why

liarose

•11 years ago

3 Replies

Do any of those with ET suffer with angina?

I get episodes of chest pain on exertion, when stressed, cold, or tired. They occur frequently, sometimes severe enough for a trip to A&E. Cardio...

I get episodes of chest pain on exertion, when stressed, cold, or tired. They oc...

Borage

•11 years ago

13 Replies

German Leukemia Portal

Hi Guys, I just wanted to draw your attention to a German Leukemia online forum, run by a leukemia survivor. The link below points to their English...

Hi Guys, I just wanted to draw your attention to a German Leukemia on...

PeggyS

•11 years ago

2 Replies

Has anyone here had a splenectomy and if so, how did it affect your haematocrit, Hgb, and platelet counts?

fernie

•11 years ago

6 Replies

Did anyone's platelets continue to rise when they first started taking Hydroxycarbamide?

My better half only started taking Hydroxycarbamide three weeks ago, he is only on 500g per day, the first week his platelets had dropped by around 50 when he...

My better half only started taking Hydroxycarbamide three weeks ago, he is only ...

Reflex4

•11 years ago

7 Replies

Do you have ET and siginificant bone pain? My lower back, legs & feet seem the worse

Hi All, Hope you are well! I have ET have had for 5 years, I suffer along with the other dibilitating side effects (severe fatigue, itch, headaches, dizziness...

Hi All, Hope you are well! I have ET have had for 5 years, I suffer along with ...

Rinty

•11 years ago

3 Replies

Do you have ET and siginificant bone pain? My lower back and legs & feet seem the worse

Hi All, Hope you are well! I have ET have had for 5 years, I suffer along with the other dibilitating side effects (severe fatigue, itch, headaches, dizziness...

Hi All, Hope you are well! I have ET have had for 5 years, I suffer along with ...

Rinty

•11 years ago

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Ruxolitinib

Having been diagnosed last year with PV my journey took the usual steps. Venesections,hydroxyea and aspirin. Common symptoms, itchiness,tiredness,blood clots...

Having been diagnosed last year with PV my journey took the usual steps. Venesec...

nj4291

•11 years ago

18 Replies

Giving a little back part 2

So I was diagnosed in January and after the initial shock, I think I accepted it fairly quickly but the difficulty I have now, 5 months in, is dealing with how...

So I was diagnosed in January and after the initial shock, I think I accepted it...

glassaddict

•11 years ago

4 Replies

Anyone else constantly picking up infections?

Hello everyone! I have ET and PV. On Aspirin and Hydroxy. I was diagnosed in January and since I seem to constantly get ill with coughs and cold. I went very...

Hello everyone! I have ET and PV. On Aspirin and Hydroxy. I was diagnosed in Ja...

glassaddict

•11 years ago

6 Replies

Fundraising events in aid of MPD Voice

Spa evening Friday 21st June, starting at 6.30 pm in The Ashford International Hotel, Simone Weil Avenue, Ashford Kent, TN24 8UX. The evening will...

Spa evening Friday 21st June, starting at 6.30 pm in The Ashford Internation...

Mazcd

Partner•11 years ago

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Informal 'meet-up' in Glasgow

Keith Johnston has very kindly offered to host an informal ‘meet-up’ in Glasgow on Tuesday 4th June, 7 – 9 pm in The High School of Glasgow, 637 Crow Road,...

Keith Johnston has very kindly offered to host an informal ‘meet-up’ in Glasgow ...

Mazcd

Partner•11 years ago

2 Replies

Did anyone of you have any muscle spasms when you first starting taking Hydroxycarbamide?

Reflex4

•11 years ago

1 Reply

Videos from the European Focus on Myeloproliferative Neoplasms and Myelodysplastic Syndromes Conference – Madrid April 2013

This conference focussed on the latest advances in MPD, MDS and MPN. The conference was attended by internationally recognized leaders in the field of...

This conference focussed on the latest advances in MPD, MDS and MPN. The confer...

Mazcd

Partner•11 years ago

1 Reply

Hi I am 38 weeks pregnant with Et baby breech so looking like c section in a week - has anyone had similar experience scared of the surgery

Dingwall1979

•11 years ago

4 Replies

I have PV and am having problems with cold hands at the moment does anyone else have similar experiences?

They are so cold I am finding it is affecting the way I hold my pen and type, I can still do both but I don't have the normal amount of 'feeling' if that makes...

They are so cold I am finding it is affecting the way I hold my pen and type, I ...

Foss33

•11 years ago

9 Replies

PV and obtaining Travel Insurance

Can anybody recommend a good and reasonable Travel Insurance company to use for worldwide travel? Going to visit family and need to obtain some insurance soon..

Can anybody recommend a good and reasonable Travel Insurance company to use for ...

NewBloom

•11 years ago

11 Replies

Living with MPDS 2013

Hi, I have decided to attend the MPD 2013 day on 16 November 2013 so have gone ahead and booked flights. I got a really good deal at the President Hotel...

Hi, I have decided to attend the MPD 2013 day on 16 November 2013 so have gone a...

Aime

•11 years ago

25 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2013

MPD Voice Summer Concert

Change of hospital

Long Term Illness

Has anyone enquired or actually taken (early) retirement with PV (or other MPD) ?

Is anyone out there a HGV (Heavy Goods Vehicle) driver?

Run from the cure - the Rick Simpson story

I have PV and am experiencing extreme weight loss. Anyone else had similar. If so why

Do any of those with ET suffer with angina?

German Leukemia Portal

Has anyone here had a splenectomy and if so, how did it affect your haematocrit, Hgb, and platelet counts?

Did anyone's platelets continue to rise when they first started taking Hydroxycarbamide?

Do you have ET and siginificant bone pain? My lower back, legs & feet seem the worse

Do you have ET and siginificant bone pain? My lower back and legs & feet seem the worse

Ruxolitinib

Giving a little back part 2

Anyone else constantly picking up infections?

Fundraising events in aid of MPD Voice

Informal 'meet-up' in Glasgow

Did anyone of you have any muscle spasms when you first starting taking Hydroxycarbamide?

Videos from the European Focus on Myeloproliferative Neoplasms and Myelodysplastic Syndromes Conference – Madrid April 2013

Hi I am 38 weeks pregnant with Et baby breech so looking like c section in a week - has anyone had similar experience scared of the surgery

I have PV and am having problems with cold hands at the moment does anyone else have similar experiences?

PV and obtaining Travel Insurance

Living with MPDS 2013

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