Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for May 2016

What would you do?

Keep your fingers crossed for me . I have just posted my final module of my diploma course in Canine Science and Biology. Strangely I feel really empty now...

Keep your fingers crossed for me . I have just posted my final module of my di...

jillydabrat

•8 years ago

19 Replies

Feel nervous

Hi I'm Jc my hematocrit is 47.4 and experiencing this nervousness. I feel good in the morning but when afternoon come it's just instance that I will fell...

Hi I'm Jc my hematocrit is 47.4 and experiencing this nervousness. I feel good ...

Godinthegarden

•8 years ago

9 Replies

Funny heart beat?

Hi, I have ET, and a couple of months ago, out of the blue, my heart started jumping about and skipping beats in the middle of the night. It hasn't stopped...

Hi, I have ET, and a couple of months ago, out of the blue, my heart started j...

marian2

•8 years ago

4 Replies

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MPN or CMML?

The mystery goes on. A couple of weeks ago, I had my fourth bmt in nine months. Still no clear diagnosis, therefore I will be sent to Oslo University Hospital...

The mystery goes on. A couple of weeks ago, I had my fourth bmt in nine months. ...

Bittebitt

•8 years ago

10 Replies

Dilemma

My next door neighbour died over 2 weeks ago and because he took ill abroad the coroner is delaying allowing his family to register the death and arrange a...

My next door neighbour died over 2 weeks ago and because he took ill abroad the ...

skodaguy

•8 years ago

16 Replies

DLA change to PIP

Dear all I have been on DLA for several years for my CRPS! A chronic pain condition which affects my mobility, I now have PV as well, I just hope they will...

Dear all I have been on DLA for several years for my CRPS! A chronic pain condit...

Lps1156

•8 years ago

4 Replies

Great North Run Sponsorship

https://www.justgiving.com/fundraising/Pamela-SIMPSON4 As you may know, I am doing the Great North Run to raise money for MPN. You can now sponsor me by...

https://www.justgiving.com/fundraising/Pamela-SIMPSON4 As you may know, I am doi...

Phelpsy

•8 years ago

5 Replies

Good Blood counts = cured?

End of 2013 I was diagnosed with MF and a few months later this was revised to MDS/MF overlap type of symdrom - this resulted in a SCT in August 2015. 8 months...

End of 2013 I was diagnosed with MF and a few months later this was revised to M...

crapaud

•8 years ago

5 Replies

Anita Stewart.

Hi all. I am 69 and have had ET and then P V for 13 years. I have been on hydroxy 50 my per day for nearly 2 years. My blood counts are fine and I haven't...

Hi all. I am 69 and have had ET and then P V for 13 years. I have been on hydrox...

Anita53

•8 years ago

14 Replies

https://www.justgiving.com/fundraising/Pamela-SIMPSON4?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Pamela-SIMPSON4&utm_campai

Hi my lovely's as most of you already know I'm taking part in the Great North Run a race I've always longed to do , I'm not a runner the most I've ever do is...

Hi my lovely's as most of you already know I'm taking part in the Great North R...

Phelpsy

•8 years ago

3 Replies

still waiting for my transfer to a New hospital with a specialist in MPNs ,

Hi everyone hope your all enjoying the summer weather it sure make me feel good , I'm still doing plenty walking to get my fitness to a good standard for the...

Hi everyone hope your all enjoying the summer weather it sure make me feel good ...

Phelpsy

•8 years ago

4 Replies

Re Celebrating new arrival

Thank you all, I have conciderd my self an old timer and an expert in MPN's and am finding it hard to deal with the progression to PV, ET was a walk in the...

Thank you all, I have conciderd my self an old timer and an expert in MPN's an...

ourlife

•8 years ago

11 Replies

PV and I'm new here!

Hello fellow PV sufferers! I have been diagnosed with PV two years ago. Although I haven't felt well for several years. I like many of us find the fatique so...

Hello fellow PV sufferers! I have been diagnosed with PV two years ago. Althoug...

Lps1156

•8 years ago

6 Replies

Good Luck to the MPN Voice Abseil Team

Well the time has nearly come for our wonderful MPN Voice Abseil Team to get ready, remember not to look down and throw themselves off St Thomas' Hospital...

Well the time has nearly come for our wonderful MPN Voice Abseil Team to get rea...

MarilynMPNVoice

Fundraising•8 years ago

1 Reply

Thank You to our MPN Voice Virgin London Marathon Team

A very big Thank You to our fantastic MPN Voice Virgin London Marathon Team, Helen Bass, Samuel Beevor and Trevor Buckley. They all finished in amazing times...

A very big Thank You to our fantastic MPN Voice Virgin London Marathon Team, Hel...

MarilynMPNVoice

Fundraising•8 years ago

Be the first to reply

Cal-reticulin positive

Hi can anyone tell me whatever means to be Cal -reticulin +ve. My platelets having been creeping up, not managed by 2 gm per day hrdroxycarbamide (3 days) with...

Hi can anyone tell me whatever means to be Cal -reticulin +ve. My platelets havi...

Bill_E

•8 years ago

8 Replies

Celebrating new arrival PV !!

Having a glass of wine and trying to be posative, after red cell mass (BMB to follow) it seems I have switched sides from ET to PV. Had a venesection today and...

Having a glass of wine and trying to be posative, after red cell mass (BMB to fo...

ourlife

•8 years ago

9 Replies

ET Advice

Hi everyone , I was diagnosed with ET 6 months ago and take aspirin daily. My platelet count ranges from 860 - 900. I was wondering, are there any foods which...

Hi everyone , I was diagnosed with ET 6 months ago and take aspirin daily. My pl...

Jackie49

•8 years ago

13 Replies

Memory loss

Has anyone on Hydrocycarbomode got memory loss?- I have started forgetting names instantly short conversations and even new faces!!! I am 47 and have ET?

Has anyone on Hydrocycarbomode got memory loss?- I have started forgetting names...

craigdarcy

•8 years ago

13 Replies

PV Ehaustion

Hi all. I am to the point where I do not want to get out of bed. The exhaustion is overwhelming. They say to exercise but I can barely stand up at times. I try...

Hi all. I am to the point where I do not want to get out of bed. The exhaustion ...

Kinsalelady

•8 years ago

21 Replies

Sharp itch in feet

I have been having a sharp itch in my feet particularly at night time. It is in my instep so I have been doing the best I can using the edge of the mattress...

I have been having a sharp itch in my feet particularly at night time. It is in...

Fionnuaghla

•8 years ago

5 Replies

Second module grade is in.............

Despite the brain fog from tiredness, pain and hydroxy, I am extremely proud to say that my Module 2 grade result came through the post today and,...

Despite the brain fog from tiredness, pain and hydroxy, I am extremely proud to ...

jillydabrat

•8 years ago

24 Replies

Patients’ forum – London 11th July 2016

Monday 11th July 2016, 6 pm – 9 pm, registration from 5.30 pm, the forum will be held in the Robens Suite, 29th Floor Tower Wing, Guy’s Hospital, Great Maze...

Monday 11th July 2016, 6 pm – 9 pm, registration from 5.30 pm, the forum will be...

Mazcd

Partner•8 years ago

Be the first to reply

MPDlife Newsletter May 2016 edition

The May 2016 edition of our newsletter MPNlife is now available, this bumper 8 page edition includes articles on fundraising events for 2016 and a farewell to...

The May 2016 edition of our newsletter MPNlife is now available, this bumper 8 p...

Mazcd

Partner•8 years ago

2 Replies

Need to reduce inflammation

Hi I need to reduce inflammation in order to supplement with iron. At the moment my iron supplements are just pushing up my ferritin levels and hardly...

Hi I need to reduce inflammation in order to supplement with iron. At the momen...

130396

•8 years ago

2 Replies

Steroids affect Platelet levels & HYdroxy doesn't equal worsening MPN

Thought you might want to know this. I got worried today when my platelet levels at my local lab had climbed up with no apparent reason. Fortunately my great...

Thought you might want to know this. I got worried today when my platelet leve...

katiewalsh

•8 years ago

2 Replies

Back and hip pain

Does anybody else suffer with back pain who has an MPN? For weeks I have had excruating back and hip pain. I have 120mg of morphine a day plus paracetamol...

Does anybody else suffer with back pain who has an MPN? For weeks I have had ex...

jillydabrat

•8 years ago

19 Replies

It's been a rainy Monday ..so I'm sending you all a smile !!

I ache all over ! I'm so tired I can't sleep ! I'm hungry ,yet too bloated to eat ! Can't remember what it's like to feel normal !! How about you ?? ...

I ache all over ! I'm so tired I can't sleep ! I'm hungry ,yet too bloated to ea...

Twinkly

•8 years ago

18 Replies

Running the Great North Run for MPN Voice

Good evening all, I am another of the loonies running the GNRun for MPN Voice. I feel privileged to be chosen and will try my hardest to get as much...

Good evening all, I am another of the loonies running the GNRun for MPN Voice. ...

Chrissie2885

•8 years ago

11 Replies

Live from NY City. Watch from Anywhere

Where can you hear unbiased and comprehensive information from two renowned MPN medical experts (Columbia and Mount Sinai) and ask them questions in-person or...

Where can you hear unbiased and comprehensive information from two renowned MPN ...

andrewschorr

•8 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2016

What would you do?

Feel nervous

Funny heart beat?

MPN or CMML?

Dilemma

DLA change to PIP

Great North Run Sponsorship

Good Blood counts = cured?

Anita Stewart.

https://www.justgiving.com/fundraising/Pamela-SIMPSON4?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Pamela-SIMPSON4&utm_campai

still waiting for my transfer to a New hospital with a specialist in MPNs ,

Re Celebrating new arrival

PV and I'm new here!

Good Luck to the MPN Voice Abseil Team

Thank You to our MPN Voice Virgin London Marathon Team

Cal-reticulin positive

Celebrating new arrival PV !!

ET Advice

Memory loss

PV Ehaustion

Sharp itch in feet

Second module grade is in.............

Patients’ forum – London 11th July 2016

MPDlife Newsletter May 2016 edition

Need to reduce inflammation

Steroids affect Platelet levels & HYdroxy doesn't equal worsening MPN

Back and hip pain

It's been a rainy Monday ..so I'm sending you all a smile !!

Running the Great North Run for MPN Voice

Live from NY City. Watch from Anywhere

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