Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for September 2017

I'm new here...

hello everyone, my sister has been recently diagnosed with PV. Can anyone tell me honestly what the best things i can do to help her are. I don't care if its...

hello everyone, my sister has been recently diagnosed with PV. Can anyone tell m...

TCMAHER

•7 years ago

12 Replies

Dizzy spell

Hi all, need some advice. I'm newly diagnosed, ET, Jak2+ just had BMB on Tuesday so waiting on all final rEsults before going on any meds etc I'm at work and...

Hi all, need some advice. I'm newly diagnosed, ET, Jak2+ just had BMB on Tuesday...

Solitairebtb

•7 years ago

9 Replies

Taking HU

Can anyone give advice on taking this drug. I have been prescribed x2 a day. Is it better to take morning or evening? Do you take them both at same time? Any...

Can anyone give advice on taking this drug. I have been prescribed x2 a day. Is ...

Eoin

•7 years ago

23 Replies

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Inteferon

Had first interferon dose today.. let's see what happens🙏🏻🙏🏻😶

muzza25

•7 years ago

8 Replies

Having a bad day

I'm having a bad day today.. not often I confine myself to bed. After a very stressful week at work.. ended up with migraine attack which I know many suffer...

I'm having a bad day today.. not often I confine myself to bed. After a very str...

heathermc

•7 years ago

11 Replies

sunshine

hi Sunshine when talking about sitting in the sun my consultant says I must wear factor 50 sunglasses and a baseball cap but avoid when the sun is at its...

hi Sunshine when talking about sitting in the sun my consultant says I must wear...

Scottishterrier

•7 years ago

2 Replies

Sunshine

Hi. Just wondering if anyone could help. I am on holiday in Portugal. Am on hydrea. 500 per day Monday to Friday and 1000 each day on Saturday and Sunday. I...

Hi. Just wondering if anyone could help. I am on holiday in Portugal. Am on hydr...

Margo18

•7 years ago

19 Replies

Diet for myelofibrosis

Good afternoon. Other than "a well balanced diet " can anybody advise on a recommended diet or source of information ? I have carried out a lot of research...

Good afternoon. Other than "a well balanced diet " can anybody advise on a reco...

kevinbros

•7 years ago

5 Replies

Donating your body organs

It's only just struck me that although I always carry a donor card with me so that my body parts can be used for others once I no longer require them, will...

It's only just struck me that although I always carry a donor card with me so th...

ChrisAnnSen

•7 years ago

6 Replies

Acupuncture for ET side effects

Hi I was wondering whether any has had acupuncture to help with side effects for ET or other MPN. Do any consultants recommend it?

Hi I was wondering whether any has had acupuncture to help with side effects fo...

Joybard

•7 years ago

13 Replies

Edinburgh forum

Maz can I just thank you and your amazing team for organising the day and also the medical staff who gave up their time for us. It was so nice to see the...

Maz can I just thank you and your amazing team for organising the day and also t...

Aime

•7 years ago

5 Replies

Tests almost completed!

Hello everyone! I have been for testing and am booked for my bone marrow on the 25th. My hemocrit is still high but slightly lower than January this year, Hb...

Hello everyone! I have been for testing and am booked for my bone marrow on the...

Jennyfluff

•7 years ago

9 Replies

Fun, Free Workshop in Tampa Area

Please join us for a fun, free Digital Sherpa Workshop Saturday September 23, 2017. At the workshops, you will able to connect with other patients like you,...

Please join us for a fun, free Digital Sherpa Workshop Saturday September 23, 20...

krayburn

•7 years ago

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Hydrea!

I have a quick question, as Hydrea decreases platelets number, does this encourage bone marrow to produce more platelets?

I have a quick question, as Hydrea decreases platelets number, does this encoura...

Hidden

•7 years ago

11 Replies

When To Treat With Meds

Hi! I am a 55 year old woman. I was diagnosed with ET after a routine blood test resulted in high platelets. Started out 615. After two months, it's now 750. I...

Hi! I am a 55 year old woman. I was diagnosed with ET after a routine blood test...

Griffey

•7 years ago

23 Replies

Edinburgh forum

Wow what a brilliant afternoon. I would just like to say thank you to all that had replied to my nervous post, and to those who spoke to me whilst there. I...

Wow what a brilliant afternoon. I would just like to say thank you to all that h...

ladydriva

•7 years ago

16 Replies

Itchy lumps myelofibrosis

Hi my husband has myelofibrosis and recently has lumps appearing on his body, these lumps are red can be itchy and sore, some on his glands. Has anyone had...

Hi my husband has myelofibrosis and recently has lumps appearing on his body, th...

ardpatrick

•7 years ago

7 Replies

Diagnosis

Hi all, new to the forum looking some advice. MY high platelets were picked up 20 years ago at age 20 at a level of 900. So for 10 plus years I was monitored...

Hi all, new to the forum looking some advice. MY high platelets were picked up 2...

Speersy1

•7 years ago

8 Replies

E.T. diagnosed CALR positive searching for more info and people with a similar diagnosis

Recently (last week) diagnosed with E.T. CALR positive so a little scary but low platelets currently, hopefully I will know alot more from you all and it helps...

Recently (last week) diagnosed with E.T. CALR positive so a little scary but low...

CLIFFE

•7 years ago

2 Replies

ET and Factor V Leiden

Hi everyone I am still looking to see if anyone on this forum has the same as me. I have been diagnosed with ET in June but I also have Factor V Leiden which...

Hi everyone I am still looking to see if anyone on this forum has the same as me...

Anne2751

•7 years ago

9 Replies

A bit gloomy

I saw my haematologist today and as my counts have been low for a bit now and I'm getting more symptoms (post ET/MF) he wants to do the dreaded bone marrow...

I saw my haematologist today and as my counts have been low for a bit now and I'...

beetle

•7 years ago

40 Replies

Ischemic Colitis/Messenteric Ischemia

Suffered for ten years. Factor V Leiden discovery put me on Coumadin in lieu of colon resection, but attacks continued. Heart attack added Plavix and 81mg...

Suffered for ten years. Factor V Leiden discovery put me on Coumadin in lieu of...

Jerrymohler

•7 years ago

7 Replies

Et diagnosis

Hi diagnosed with ET yesterday. Platelet count 2300 so on treatment to bring this down. Bit scared but so good reading about it from you guys. Karen x

Hi diagnosed with ET yesterday. Platelet count 2300 so on treatment to bring thi...

karencle

•7 years ago

5 Replies

PV Tracker Tool

Hey everyone, Have a look at the below link. For me this is going brilliant....

James1731

•7 years ago

9 Replies

Insurance and MPNs

Dear all, I have never had critical illness cover just life assurance for mortgages, in the past 10 days I have been diagnosed with an MPN - due to mutation of...

Dear all, I have never had critical illness cover just life assurance for mortga...

jimb7174

•7 years ago

3 Replies

All good

After having bloods taken and a very long wait of two hours today at the hospital, my results were all good I am pleased to say, so I remain on the same...

After having bloods taken and a very long wait of two hours today at the hospita...

Superwoman

•7 years ago

9 Replies

Deformed?

I think my head is gone out deformed from the top of my ears close to the eye, what can i do to re shape it

I think my head is gone out deformed from the top of my ears close to the eye, w...

Ransford

•7 years ago

1 Reply

Haemoglobin Meter

Has anyone used a haemoglobin meter I believe they are around £40, or as Donald mentioned in an earlier post hct meter?

Has anyone used a haemoglobin meter I believe they are around £40, or as Donald ...

Eoin

•7 years ago

1 Reply

Hi I'm New here

Hi everyone, my name is Christina. I found your forum 3 days ago and am very impressed at how helpful and supportive everyone is to each other... so I felt it...

Hi everyone, my name is Christina. I found your forum 3 days ago and am very imp...

Cmg5935

•7 years ago

26 Replies

ET or Secondary?!

hi there, my name is Ammaro, I'm scared shitless.. Diagnosis: Essential Thrombocytosis Age:47 Sex: male Personal: No smoker – no alcohol Chronic illness:...

hi there, my name is Ammaro, I'm scared shitless.. Diagnosis: Essential Thromboc...

Hidden

•7 years ago

18 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2017

I'm new here...

Dizzy spell

Taking HU

Inteferon

Having a bad day

sunshine

Sunshine

Diet for myelofibrosis

Donating your body organs

Acupuncture for ET side effects

Edinburgh forum

Tests almost completed!

Fun, Free Workshop in Tampa Area

Hydrea!

When To Treat With Meds

Edinburgh forum

Itchy lumps myelofibrosis

Diagnosis

E.T. diagnosed CALR positive searching for more info and people with a similar diagnosis

ET and Factor V Leiden

A bit gloomy

Ischemic Colitis/Messenteric Ischemia

Et diagnosis

PV Tracker Tool

Insurance and MPNs

All good

Deformed?

Haemoglobin Meter

Hi I'm New here

ET or Secondary?!

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