Posts - MPN Voice | HealthUnlocked

MPN Voice

10,443 members • 14,396 posts

All posts for April 2016

Any news from Jedireject?

Without wishing to disrespect Jedi's privacy, does anyone have any news of our dear friend and ' compagnon' Jedireject. Hoping you all a pleasant week. Gary

Without wishing to disrespect Jedi's privacy, does anyone have any news of our d...

crapaud

•8 years ago

28 Replies

Worried about this info

I have E.T and Jak2+. I had my 3 monthly routine bloods in March and saw a registrar for my results and consultation. I have read and been told that very...

I have E.T and Jak2+. I had my 3 monthly routine bloods in March and saw a regis...

jeaniej1x

•8 years ago

18 Replies

Blood Stains

Hi This may sound like a strange question, but my husband has had MF for about 5 years. Just recently I have noticed that if he bleeds on his clothes etc, I...

Hi This may sound like a strange question, but my husband has had MF for about ...

cheridiane

•8 years ago

3 Replies

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

Hair colouring

I hope my question does not seem trivial or insensitive to those of you with pain or discomfort. I have been taking hydroxy for three weeks now and so far...

I hope my question does not seem trivial or insensitive to those of you with pai...

Fionnuaghla

•8 years ago

16 Replies

Pegasys - more good news

Saw my haem yesterday and pleased to hear that my platelets are stable at 333, with other counts and tests OK and no significant side effects, so I'm reducing...

Saw my haem yesterday and pleased to hear that my platelets are stable at 333, w...

AndyT

•8 years ago

4 Replies

ET and surgery

Hi all, I have been told that I need to have surgery to have my gallbladder removed. I am 35 and have ET, I take aspirin daily. My platelets tend to be...

Hi all, I have been told that I need to have surgery to have my gallbladder remo...

Katyak

•8 years ago

16 Replies

Changed my hospitals ,

Hi my lovely's it's been some time since I've discussed changing To a MPN Specialist , well I've done it , 😜 I discussed it with my haematology department &...

Hi my lovely's it's been some time since I've discussed changing To a MPN Spec...

Phelpsy

•8 years ago

15 Replies

Feeling a bit fed up? This'll get your feet a-tappin'!

Hi everybody, if you're in need of a bit of a boost try downloading this "Life's what you make it" by Graham Colton ( available on iTunes ) And clap, tap and...

Hi everybody, if you're in need of a bit of a boost try downloading this "Life's...

Loubprv

Volunteer•8 years ago

3 Replies

Anaemia and PV

Hi Maz, I have sent you a separate email but thought it may be helpful for forum friends to see the question and answer as I know it affects a lot of us: While...

Hi Maz, I have sent you a separate email but thought it may be helpful for forum...

Aime

•8 years ago

11 Replies

MPN Voice April Fundraising Update

April is a very exciting month for MPN Voice. Not only have we got people running for MPN Voice this month, we’ve also got a young lady throwing herself out...

April is a very exciting month for MPN Voice. Not only have we got people runni...

Mazcd

Partner•8 years ago

8 Replies

PV and Enlarged Spleen

Hello All, Looking for some feedback on what symptoms did you experience with an enlarged spleen and was medication prescribed to help. Many Thanks, Jay.

Hello All, Looking for some feedback on what symptoms did you experience with an...

Csp928

•8 years ago

7 Replies

MPN Voice Patients’ Forum – Bath, Tuesday 3rd May 2016 FORUM FULLY BOOKED

We are very sorry but the forum is now fully booked and we are unable to take any further bookings for places, however, if you wish to attend we can put your...

We are very sorry but the forum is now fully booked and we are unable to take an...

Mazcd

Partner•8 years ago

4 Replies

Newly diagnosed with PV

Hello MPN community. Was just diagnosed a couple weeks ago with PV. I am 52 and have had no major health issues throughout my life. I have been active in...

Hello MPN community. Was just diagnosed a couple weeks ago with PV. I am 52 and ...

Csp928

•8 years ago

18 Replies

Daughter 16 just diagnose

Can anyone help? My Daughter us 16 and has just been diagnosed with ET. She is now taking aspirin daily which seems to be helping with her headaches. She...

Can anyone help? My Daughter us 16 and has just been diagnosed with ET. She is...

sue100

•8 years ago

12 Replies

Headache nausea

Have a headache, dizzy, nausea going on for about week. Go to bed with it and wake up with it. Since we can only Tylenol and that is not touching it. My...

Have a headache, dizzy, nausea going on for about week. Go to bed with it and w...

mickey64

•8 years ago

1 Reply

Belfast

Hi Maz Just a short message to thank you for an excellent forum in Belfast yesterday. All the speakers were so good at getting a serious message across in a...

Hi Maz Just a short message to thank you for an excellent forum in Belfast yeste...

Margo18

•8 years ago

2 Replies

Tingling

WHAT WOULD CAUSE AN MUCH GREATER TINGLING?

garden41BULBS

•8 years ago

6 Replies

Primary angiitis

Have been advised to have a Lumbar punture to see for pressure.If positive my neurologist wants me to have a angiogram and then a brain biopsy.Have just...

Have been advised to have a Lumbar punture to see for pressure.If positive my ne...

Hidden

•8 years ago

3 Replies

Hydroxycarbamide and Amitriptyline

I have been taking Amitriptyline 10mg for some time for back ache. Last week I started to take Hydroxy for PV. Amitrip has a dehydrating effect which of...

I have been taking Amitriptyline 10mg for some time for back ache. Last week I ...

Fionnuaghla

•8 years ago

2 Replies

Gastrointestinal Issues from MPN

Have any of you had gastrointestinal issues associated with your ET or PV? I am referring to colon bleeding. Bright red bleed associated with pain in lower...

Have any of you had gastrointestinal issues associated with your ET or PV? I am...

Sklines

•8 years ago

7 Replies

MRI scan on shoulder showing bone marrow "problem"

Finally got to have an MRI scan on a painful/frozen shoulder . My ortho consultant says the results show arthritic wear so suggests a keyhole op. to clean it...

Finally got to have an MRI scan on a painful/frozen shoulder . My ortho consulta...

PeterET

•8 years ago

2 Replies

PV to myleofibrosis signs

Hi I've been reading up and just wondered if people who had had PV and it had developed have any views as to what their early symptoms were ? I'd be interested...

Hi I've been reading up and just wondered if people who had had PV and it had de...

Chris1919

•8 years ago

6 Replies

Any date for North East Forum?

Morning Maz Eagerly awaiting my first ever MPN forum at Newcastle. Any dates available yet? Cheers flower Jill

Morning Maz Eagerly awaiting my first ever MPN forum at Newcastle. Any dates av...

jillydabrat

•8 years ago

1 Reply

Events/Meet ups MPN community

Events/meet ups. Are there any events planned for June--events, meet ups in London, Hertfordshire area?

Events/meet ups. Are there any events planned for June--events, meet ups in Lon...

jeanr

•8 years ago

4 Replies

Blood results shooting up

So I got my HC down to 0.43, hemoglibin to 150 and ok my platlets were stubborn around 450 after my first 6 weeks of venesections but I then stopped . I've...

So I got my HC down to 0.43, hemoglibin to 150 and ok my platlets were stubborn ...

Chris1919

•8 years ago

2 Replies

Since having the tummy surgery ,Iv been experiencing very vivid dreams ,I'm left miles away from home ,alone and terrified .is it anasthetic

I dream I can't walk so I'm crawling and crying ,I wake up in a sweat it's all so vivid , I think this blood disorder leaves us out of control ,it's a...

I dream I can't walk so I'm crawling and crying ,I wake up in a sweat it's all s...

Twinkly

•8 years ago

10 Replies

Anybody got any energy to spare?

Morning campers 😁 I am going to see consultant this afternoon for the results of my brain and upper GI scans so, as you can imagine, I have been a nervous...

Morning campers 😁 I am going to see consultant this afternoon for the results o...

jillydabrat

•8 years ago

15 Replies

Vasculitis

I have wbc count and have had recent blindness in one eye with disturbances in seeing.My neurologist has told me looking at all my symptoms that he thinks I...

I have wbc count and have had recent blindness in one eye with disturbances in s...

Hidden

•8 years ago

6 Replies

Fatigue

The impact is hitting home now. I have been on 500 mg hydrxy for 10 days now. Still feel tingles, and feel weary, especially in my legs. Am I on a high dose?

The impact is hitting home now. I have been on 500 mg hydrxy for 10 days now. St...

garden41BULBS

•8 years ago

9 Replies

Patients forum Belfast

anybody going to this next week. Myself and my husband are driving up from Dublin. Look forward to meet some of you.

anybody going to this next week. Myself and my husband are driving up from Dub...

kentuckyrain

•8 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2016

Any news from Jedireject?

Worried about this info

Blood Stains

Hair colouring

Pegasys - more good news

ET and surgery

Changed my hospitals ,

Feeling a bit fed up? This'll get your feet a-tappin'!

Anaemia and PV

MPN Voice April Fundraising Update

PV and Enlarged Spleen

MPN Voice Patients’ Forum – Bath, Tuesday 3rd May 2016 FORUM FULLY BOOKED

Newly diagnosed with PV

Daughter 16 just diagnose

Headache nausea

Belfast

Tingling

Primary angiitis

Hydroxycarbamide and Amitriptyline

Gastrointestinal Issues from MPN

MRI scan on shoulder showing bone marrow "problem"

PV to myleofibrosis signs

Any date for North East Forum?

Events/Meet ups MPN community

Blood results shooting up

Since having the tummy surgery ,Iv been experiencing very vivid dreams ,I'm left miles away from home ,alone and terrified .is it anasthetic

Anybody got any energy to spare?

Vasculitis

Fatigue

Patients forum Belfast

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive