Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2016

Facebook Live

Hi all, thank you so much for taking our recent clinical trial survey. Andrew will share the results of that survey during a Facebook Live discussion from...

Hi all, thank you so much for taking our recent clinical trial survey. Andrew wi...

tclementi

•8 years ago

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Vaccination

I am due to have a hepatitis B injection at work on Wednesday I forgot to ask the haematology department if it was ok to have it. Does anybody know?

I am due to have a hepatitis B injection at work on Wednesday I forgot to ask ...

Jackie49

•8 years ago

3 Replies

ET and fatigue

Havent posted for a while......I was diagnosed with ET over a year ago and have been on Hydroxycarbamide ever since. The main effect on me has been fatigue,...

Havent posted for a while......I was diagnosed with ET over a year ago and have ...

diane1959

•8 years ago

24 Replies

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Bone pain

Hi All I just wanted a bit of advice really. I was diagnosed with MF in April 2016 and have been relatively well since my diagnosis. Apart from feeling...

Hi All I just wanted a bit of advice really. I was diagnosed with MF in April 2...

Lesleyt10

•8 years ago

6 Replies

Good to talk

Hello I have had PRV for 18 months now I am so pleased to find this site has I don't know any one with this. My doctors and at hospital are to busy to talk . I...

Hello I have had PRV for 18 months now I am so pleased to find this site has I d...

Poppy6060

•8 years ago

11 Replies

Is ET a chronic illness

Just about to see works Dr for my routine check up. I have sciatica. Have had for a good year in both legs. Is my ET seen as a chronic disease. I know it...

Just about to see works Dr for my routine check up. I have sciatica. Have had ...

heathermc

•8 years ago

8 Replies

Eye migraines

I have pv and hyper eosonphile. I have been experiencing a lot of eye migraines and dizziness lately. I do take Hydrea also. Does anyone else have this...

I have pv and hyper eosonphile. I have been experiencing a lot of eye migraines ...

spikesnana

•8 years ago

3 Replies

PIP and the smiling assassin

Forgot to let you know how it went with the PIP assessment from the smiling assassin who also brought her own T-Bag!!! Yep, her own T-Bag. All I can say is get...

Forgot to let you know how it went with the PIP assessment from the smiling assa...

nodmeister

•8 years ago

10 Replies

If you have a worry ,,share it with us ,,some one here will help put your mind to rest !

Thoughts for a Friday . A problem shared is a problem halved ! Right ??

Twinkly

•8 years ago

9 Replies

Constant venesection problems

Hi all I have PV and tend to need venesection every 8 weeks. I'm always well hydrated, I keep my arms warm and moving before venesection, but my veins are...

Hi all I have PV and tend to need venesection every 8 weeks. I'm always well hyd...

Kari1961

•8 years ago

2 Replies

Turning 60

Has anyone out there decided against taking treatment? I know the advice is to take treatment usually , it seems to be HU. I was just wondering if anyone...

Has anyone out there decided against taking treatment? I know the advice is to t...

jodary

•8 years ago

27 Replies

Let's talk grass roots level !! It's time to make a big change in your life style .once diagnosed ,your whole world needs to re evaluate

I was so very lucky ,a friend sent me a book through the post ,I never normally read much ,but I decided to make the effort .its a cheap paperback ,,,The Ph...

I was so very lucky ,a friend sent me a book through the post ,I never normally ...

Twinkly

•8 years ago

13 Replies

Staying connected - Calr Mutation

Dear folks, i am back again! Its been a while. Would always love to stay connected with same calr mutation as me. Just to share I had my blood test on 21 Jun,...

Dear folks, i am back again! Its been a while. Would always love to stay connect...

swess

•8 years ago

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Newly diagnoses with Myelofibrosis ( previously ET)

HI everyone. I just got the diagnosis this week and it has been a real shock. I am 47 and have had ET for 3 years. At my last check up I was anaemic which...

HI everyone. I just got the diagnosis this week and it has been a real shock. ...

Mrs_Average

•8 years ago

15 Replies

ET and low ferritin with fatigue

Hi, My ferritin is always very low, right now at 10 yet all of my other iron studies are normal. Could this be the cause of extreme fatigue? Is there a...

Hi, My ferritin is always very low, right now at 10 yet all of my other iron st...

DH65

•8 years ago

17 Replies

My Referral to see a MPN Specialist is tomorrow ,yekkkkks

I've waited so long for this Appointment March I was last seen , After deciding to change hospitals earlier in the year it's been so stressful for me , Not...

I've waited so long for this Appointment March I was last seen , After decidin...

Phelpsy

•8 years ago

17 Replies

Great Information

This is the best and most simplified information I have read which helps me get a clearer understanding of my new disorder. Hope it helps others like myself....

This is the best and most simplified information I have read which helps me get ...

FJOS

•8 years ago

1 Reply

Change, don't you hate it?

Some people face a family tragedy by setting up a charity or doing sponsored events to make something good come out of something bad. Others want to kick out...

Some people face a family tragedy by setting up a charity or doing sponsored eve...

Borage

•8 years ago

1 Reply

London forum 2016 .. July 11 th

Hi all ,here I am. Twinkly , been cut off a while but I'm back again now , Wasn't it a good evening out in London at guys on Monday ,perry ( my son ) drove me...

Hi all ,here I am. Twinkly , been cut off a while but I'm back again now , Wasn'...

Twinkly

•8 years ago

6 Replies

Mpn forum

Hi all my names Wayne and I'm new to this site , I attended the meeting in London at guys yesterday , I was quite nervous but so glad I went ,

Hi all my names Wayne and I'm new to this site , I attended the meeting in Londo...

Captaincorbett

•8 years ago

15 Replies

London forum last night

I'd just like to say it was great to meet so many people at the event last night. These meetings provide so much information, and it was very interesting...

I'd just like to say it was great to meet so many people at the event last night...

MarkD6701

•8 years ago

5 Replies

Share Your Thoughts on Clinical Trials- Take Our Survey

Patient Power’s Andrew Schorr will be speaking again before another major audience – this time in Boston on July 21st to heads of research at pharmaceutical...

Patient Power’s Andrew Schorr will be speaking again before another major audien...

tclementi

•8 years ago

10 Replies

Bone marrow biopsy

Good morning my MPN family. I often heard on here that BMB is not very pleasant. I have never had one but it appears by the posts I read that's it's when not...

Good morning my MPN family. I often heard on here that BMB is not very pleasant...

jillydabrat

•8 years ago

27 Replies

ET progressing - blasts present?

Hello everyone. I haven't participated on this site much as I've generally put my ET in a box that I only take out twice a year when I have my check ups at the...

Hello everyone. I haven't participated on this site much as I've generally put m...

Mrs_Average

•8 years ago

6 Replies

Great North Run for MPN Voice - Update

Hello - here is my latest update. I have managed two 7 mile runs this week which I am pleased with as I have backed off training in the last couple of weeks...

Hello - here is my latest update. I have managed two 7 mile runs this week which...

Chrissie2885

•8 years ago

7 Replies

My 5k Done , for Race for Life 💗

I do this with my 2 sisters every year in memory of my Sister 48 yrs old she was taken from us to soon X Next is 13-1 mile for MPNvoice in September X...

I do this with my 2 sisters every year in memory of my Sister 48 yrs old she ...

Phelpsy

•8 years ago

6 Replies

Turning 60

Hi All, I am turning 60 in a few months, I have ET and have only been on aspirin for the last 5 years. I am naturally concerned as to what is going to happen...

Hi All, I am turning 60 in a few months, I have ET and have only been on aspirin...

jodary

•8 years ago

22 Replies

Latest Pose, How it Goes, Wheelchair Woes

Good Morning everyone. . Hope this post finds you all in good or reasonable fettle. Just thought I'd post an update and have a bit of whinge about my recent...

Good Morning everyone. . Hope this post finds you all in good or reasonable fett...

JediReject

•8 years ago

61 Replies

Recently diagnosed ET

Hi, my name is Ian, I'm 54 and have just been diagnosed with ET. It's all quite new and scary at the moment. I seen my haemotologist 2 days ago and he told me...

Hi, my name is Ian, I'm 54 and have just been diagnosed with ET. It's all quite ...

conno61

•8 years ago

23 Replies

Systolic Blood Pressure

Has anyone had the experience of their blood pressure rising after an ET diagnosis (not immediately after - I think all of us had a slight increase in blood...

Has anyone had the experience of their blood pressure rising after an ET diagnos...

Hidden

•8 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2016

Facebook Live

Vaccination

ET and fatigue

Bone pain

Good to talk

Is ET a chronic illness

Eye migraines

PIP and the smiling assassin

If you have a worry ,,share it with us ,,some one here will help put your mind to rest !

Constant venesection problems

Turning 60

Let's talk grass roots level !! It's time to make a big change in your life style .once diagnosed ,your whole world needs to re evaluate

Staying connected - Calr Mutation

Newly diagnoses with Myelofibrosis ( previously ET)

ET and low ferritin with fatigue

My Referral to see a MPN Specialist is tomorrow ,yekkkkks

Great Information

Change, don't you hate it?

London forum 2016 .. July 11 th

Mpn forum

London forum last night

Share Your Thoughts on Clinical Trials- Take Our Survey

Bone marrow biopsy

ET progressing - blasts present?

Great North Run for MPN Voice - Update

My 5k Done , for Race for Life 💗

Turning 60

Latest Pose, How it Goes, Wheelchair Woes

Recently diagnosed ET

Systolic Blood Pressure

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