Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2015

I am so sorry

I am so sorry to hear about your husband and so sorry if you have family to I have essential thrombocytheamia I have had it since 1994 I saw on internet it...

I am so sorry to hear about your husband and so sorry if you have family to I ha...

Scottishterrier

•9 years ago

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Mouth

Hello all. I have black steaks appearing in the roof of my mouth, they don't hurt but are spreading. GP and dentist say it's nothing to worry about, does...

Hello all. I have black steaks appearing in the roof of my mouth, they don't h...

Karen1970

•9 years ago

1 Reply

Wow! MPN "TV" from London Quite Popular!

Right now 143 people are registered to watch next Friday's patient forum from London. We have room for about 500 so take advantage of this free program online...

Right now 143 people are registered to watch next Friday's patient forum from Lo...

andrewschorr

•9 years ago

1 Reply

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Feeling stupid,unhappy,a bit angry

My husband died in September of pulmonary hypertension and acute anemia. Did you know too many platelets can cause PH. We didn't our hemotologist didnt....

My husband died in September of pulmonary hypertension and acute anemia. Did y...

VlaneyBab

•9 years ago

9 Replies

I'm so pleased my brain scan was normal last week ....

If not who knows where I'd be now ?? Grey ol Wednesday ,but not in my heart ,,keep twinklin !!! Xxx

If not who knows where I'd be now ?? Grey ol Wednesday ,but not in my heart ,...

Twinkly

•9 years ago

2 Replies

Conditioning before BMT

I have MF and in a couple of weeks will be having a BMT. My age (53) and relatively good health led me to believe I would be receiving a full and complete...

I have MF and in a couple of weeks will be having a BMT. My age (53) and relativ...

crapaud

•9 years ago

10 Replies

Summers here at last ..here's something I wanted to share with you all !

How can you feel unhappy with this especially for you from me ??

Twinkly

•9 years ago

10 Replies

Sun exposure

Hello All, I have just read that whilst on long term Hydroxy ,you should avoid sun exposure and you're Dr should give you regular skin inspections as you are...

Hello All, I have just read that whilst on long term Hydroxy ,you should avoid ...

stevenjust

•9 years ago

14 Replies

Does anybody else have

Does anybody else have any tiny red spots on their body? I have loads, about the size of a pin head, slightly raised, on my torso? Anybody know if it is...

Does anybody else have any tiny red spots on their body? I have loads, about the...

lizzziep

•9 years ago

17 Replies

Watch London Forum live online

I am excited more than 100 people with MPNs are registered to watch the July 24th MPN Voice London forum live. I will be your "reporter" for the online...

I am excited more than 100 people with MPNs are registered to watch the July 24t...

andrewschorr

•9 years ago

5 Replies

Leg Cramps

I don't post often on here but was wondering... Having been diagnosed with MF in 2011 at the age of 60 (actually on my birthday) I have been on Hydroxy and...

I don't post often on here but was wondering... Having been diagnosed with MF in...

dave117

•9 years ago

20 Replies

Just a update of my last hospital appointment ,

Hi everyone hope your all well :) And enjoying the summer / Rain lol Just updating you on my last appointment My platelet count had risen not high by any...

Hi everyone hope your all well :) And enjoying the summer / Rain lol Just updat...

Phelpsy

•9 years ago

12 Replies

Spa Day

Hello lovelies. My friends booked a spa day for me a while back to boost me up abit, which is for this Sunday and they have just seen a health and safety...

Hello lovelies. My friends booked a spa day for me a while back to boost me up...

Karen1970

•9 years ago

26 Replies

My lovely trial nurse Kay just emailed .my scan results ,say my brain is normal ..who'd have thought it ??

Truly releaved . I can drive my little red zippy golf again ...keep twinklin. Xxx

Truly releaved . I can drive my little red zippy golf again ...keep twinklin...

Twinkly

•9 years ago

10 Replies

Exjade rash

After just receiving blood transfusion therapy for my MF for a year my Haemo thought it was time for some iron chelation. Exjade was the preferred route. I...

After just receiving blood transfusion therapy for my MF for a year my Haemo tho...

trevic

•9 years ago

3 Replies

Scan went well in and out in five minutes ..

No worries ,,lovely young nurse to hold my hand ,as I lay down on the bed ,just a few clicks and shuffles ..then it's over ..results will go to Jacob ..next...

No worries ,,lovely young nurse to hold my hand ,as I lay down on the bed ,just...

Twinkly

•9 years ago

8 Replies

I'm glad the sun is shining on this orrible Monday ,iv got hospital today ,brain scan .i had a fall in tesco car park ,dizzy and headaches .

Time to check it out ,been feeling dizzy with headaches more often ,my lovely Jacob has decided to be on the safe side ,,but I do hate scans ,don't you ??...

Time to check it out ,been feeling dizzy with headaches more often ,my lovely Ja...

Twinkly

•9 years ago

11 Replies

Manchester meet up!

Hi everyone, i was wondering whether anyone living in or around manchester would like to organise a meet up for peer support? I would always love to attend the...

Hi everyone, i was wondering whether anyone living in or around manchester would...

Jennie_Barnes

•9 years ago

39 Replies

Haematocrit

Does anyone else suffer with brain fog when their Haematocrit levels rise? My head feels much clearer when my level is about 37 but at 40 I feel as if I'm...

Does anyone else suffer with brain fog when their Haematocrit levels rise? My he...

Nickyb57

•9 years ago

7 Replies

Excited to be Meeting UK MPN folks in London

I am honored that MPN Voice is including me in the London July 24 meeting and I am excited to meet other folks with an MPN. I have primary myelofibrosis and...

I am honored that MPN Voice is including me in the London July 24 meeting and I ...

andrewschorr

•9 years ago

9 Replies

Please help me support my niece with her challenge to raise money for MPN Voice. Thank you

https://www.justgiving.com/Kayleigh-spence/

MicheleL

•9 years ago

3 Replies

MPN Voice Patients’ Forum London – Friday 24th July 2015, 6 – 9 pm Watch the forum Online

For the first time the patients’ forum will be available to watch online, so if you are unable to join us in person you can register to watch online. Register...

For the first time the patients’ forum will be available to watch online, so if ...

Mazcd

Partner•9 years ago

9 Replies

Good Luck David Brailsford 2 Events in July!!!

We've just received David's blog about his recent Cycling Events, fundraising for MPN Voice, which we will post on the website soon!! July is going to be a...

We've just received David's blog about his recent Cycling Events, fundraising fo...

MarilynMPNVoice

Fundraising•9 years ago

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MPN Voice July Fundraising Updates

Well June was a fantastic fundraising month for MPN Voice!!! You will soon be able to see pictures of all our fantastic June Fundraising Heroes on the MPN...

Well June was a fantastic fundraising month for MPN Voice!!! You will soon be ab...

MarilynMPNVoice

Fundraising•9 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2015

I am so sorry

Mouth

Wow! MPN "TV" from London Quite Popular!

Feeling stupid,unhappy,a bit angry

I'm so pleased my brain scan was normal last week ....

Conditioning before BMT

Summers here at last ..here's something I wanted to share with you all !

Sun exposure

Does anybody else have

Watch London Forum live online

Leg Cramps

Just a update of my last hospital appointment ,

Spa Day

My lovely trial nurse Kay just emailed .my scan results ,say my brain is normal ..who'd have thought it ??

Exjade rash

Scan went well in and out in five minutes ..

I'm glad the sun is shining on this orrible Monday ,iv got hospital today ,brain scan .i had a fall in tesco car park ,dizzy and headaches .

Manchester meet up!

Haematocrit

Excited to be Meeting UK MPN folks in London

Please help me support my niece with her challenge to raise money for MPN Voice. Thank you

MPN Voice Patients’ Forum London – Friday 24th July 2015, 6 – 9 pm Watch the forum Online

Good Luck David Brailsford 2 Events in July!!!

MPN Voice July Fundraising Updates

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