Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for May 2019

ET (confirmed) and fibrosis grade

Hello to all, I have my BMB results that confirm a mild form of ET and although my Heamatologist told me that i have no fibrosis, in the paper is written:...

Hello to all, I have my BMB results that confirm a mild form of ET and although ...

Aneliv9

•5 years ago

17 Replies

Lost driving licence

Hi, my husband has just been diagnosed with Essential Thrombocythemia, he is 62 and a HGV driver, at the moment they have taken his driving licence away...

Hi, my husband has just been diagnosed with Essential Thrombocythemia, he is 62 ...

Landrover57

•5 years ago

6 Replies

ET and surgery

Hello, Since I am a newbie ET'er and learning so much from this site and all of you, I thought I would ask about how routine surgeries are impacted. I need...

Hello, Since I am a newbie ET'er and learning so much from this site and all of ...

Jschwab

•5 years ago

13 Replies

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WEIGHT LOSS????

Just diagnosed. Has anyone noticed any weight loss with ET??? Eating well, lost a few pounds.

Just diagnosed. Has anyone noticed any weight loss with ET??? Eating well, los...

MPN123

•5 years ago

9 Replies

Balance

Does ET affect your balance? I’ve been a bit wobbly or is that just fatigue? I might have sent this already soz x

Does ET affect your balance? I’ve been a bit wobbly or is that just fatigue? I m...

Andra13

•5 years ago

6 Replies

Balance

Does ET affect your balance?

Andra13

•5 years ago

5 Replies

Blood sister

Met with Janice and her husband Ted today. Sunshine all the way! Thank you for a lovely afternoon both. L x

Met with Janice and her husband Ted today. Sunshine all the way! Thank you for...

Sand-Dancer

•5 years ago

4 Replies

Sunshine alert

For those of us on hydroxy it’s that time of year again where things get really difficult. Can anyone please recommend me a source of UV clothing for sum...

For those of us on hydroxy it’s that time of year again where things get really...

Hilarya

•5 years ago

4 Replies

JUST DIAGNOSED-ET

Just diagnosed, bone marrow biopsy tomorrow to confirm, etc. DOES ANYONE HAVE SYMPTOMS OF A LIGHTHEADED, "FUZZY" HEAD. RINGING IN EARS. Seems to be my main...

Just diagnosed, bone marrow biopsy tomorrow to confirm, etc. DOES ANYONE HAVE S...

MPN123

•5 years ago

8 Replies

Sore ears

I have PV.l Looking for reason and or help with symptoms. Dull ache both ears no hearing loss . This has been an ongoing issue for about 5 years. The attack...

I have PV.l Looking for reason and or help with symptoms. Dull ache both ears n...

EleanorPV

•5 years ago

2 Replies

Sickness

Good morning all... I was diagnosed with E/T jak2+ in April this year.... I am suffering from sickness... mainly in the mornings but can happen at Radom times...

Good morning all... I was diagnosed with E/T jak2+ in April this year.... I am s...

Dazakella2010

•5 years ago

18 Replies

No mutant burden

I am new to this and was reading some old posts. There was one discussing mutant burden and what this might mean. I am looking at my Jak2 study results where...

I am new to this and was reading some old posts. There was one discussing mutant...

Photoshopuser

•5 years ago

6 Replies

Hydroxy

So I took one capsule last night and today have had a headache with a pink face ! I spoke to the mpn nurse who seemed unconcerned especially about my pink...

So I took one capsule last night and today have had a headache with a pink face ...

jodary

•5 years ago

22 Replies

Trying to get info on JAK 2 mutant allele burden

please explain what JAK 2 mutant allele burden is. There was a recent post with a link and now I cannot find it. Please help me relocate it or if not--info...

please explain what JAK 2 mutant allele burden is. There was a recent post with...

milw532

•5 years ago

4 Replies

reflexology

Have had ET &Jak 2 for 9 years. Take 17 Hydroxycarbamide each week . Cope Ok . Was given a gift of a session of reflexology . Twenty four hours later wow the...

Have had ET &Jak 2 for 9 years. Take 17 Hydroxycarbamide each week . Cope Ok ....

Lucycourt

•5 years ago

2 Replies

Muscle cramps

Hi I've been taking hydroxy since September2018. Don't seem to have side effects. I have arthritis and my joints have been worse lately. I've now started to...

Hi I've been taking hydroxy since September2018. Don't seem to have side effects...

Reikiray

•5 years ago

4 Replies

Thank you

Thank you for all your responses. You have given me a good incite into what I need to look out for, start asking about and researching. It helps to be able to...

Thank you for all your responses. You have given me a good incite into what I n...

Rocket2017

•5 years ago

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First Hydroxy

Well I have just taken my first capsule ate 2 biscuits and 2 glasses of water but I am sure I can still feel it. It took me ages to actually take it, I know...

Well I have just taken my first capsule ate 2 biscuits and 2 glasses of water bu...

jodary

•5 years ago

45 Replies

Pegasys interferon shortage

Hi, Had my monthly haematology check up the other day and my consultant advised that there is a manufacturing shortage of peg interferon at the moment so they...

Hi, Had my monthly haematology check up the other day and my consultant advised ...

Spam1979

•5 years ago

16 Replies

Sunblock update

I have just discovered that No7 now do a factor 30 Lip balm with a 5 star uva rating and it's also hypoallergenic. It's for eyes as well. I've tried it and...

I have just discovered that No7 now do a factor 30 Lip balm with a 5 star uva ra...

Carolyn77

•5 years ago

7 Replies

Sharp pain on forearm when touched, is this ET symptom?

Hi, it's me again. I have another question I can't find an answer to. Recently I am experiencing a very painful area on my forearm, but only when it's touched....

Hi, it's me again. I have another question I can't find an answer to. Recently I...

azaelea

•5 years ago

2 Replies

Non caring attitude of doctors.

Hi all I was diagnosed with ET JK2 8 months ago. After various symptoms for years being put down as imagining it ,finally put through to a doctor at the...

Hi all I was diagnosed with ET JK2 8 months ago. After various symptoms for ye...

Rocket2017

•5 years ago

8 Replies

Remission with peg interferon

I was wondering if people have had any success with remission using this drug for certain amount of years. Is there hope to reduce their burden even if is 56%.

I was wondering if people have had any success with remission using this drug fo...

Zar77

•5 years ago

2 Replies

To people not receiving treatment for their MPN what are your symptoms that you are immunocompromised?

I know those of you receiving chemotherapy for your MPN are more likely to show symptoms of being immunocompromised but I'm wondering about the rest of us who...

I know those of you receiving chemotherapy for your MPN are more likely to show ...

clubdino

•5 years ago

20 Replies

For my MPN friends

😘

Sand-Dancer

•5 years ago

17 Replies

Advice

Does anyone get joint cracking or do I need to see my gp.

Avamia94

•5 years ago

9 Replies

How to get rid of that dark spot ?

Hey guys, there was a pimple on that spot and now it has turned into dark spot which affects my look. Though i am not beautiful but still I want to get rid of...

Hey guys, there was a pimple on that spot and now it has turned into dark spot w...

Rohit008

•5 years ago

4 Replies

Platlet count

Hi all... my platelets were 521 in March.... just had my bloods re done this week and they have reduced to 487. My symptoms have been worse than ever this...

Hi all... my platelets were 521 in March.... just had my bloods re done this wee...

Dazakella2010

•5 years ago

38 Replies

Can folic acid cause a raise in platelets?

Hey guys, Has anyone experienced or heard of a rise in platelets when taking folic acid/folate? I have been reading that people with very low platelets are...

Hey guys, Has anyone experienced or heard of a rise in platelets when taking fol...

CommonDaisy

•5 years ago

12 Replies

Keto Ultra Reviews

Keto Ultra Reviews Not only do you have to eat the correct way but you need to condition your body up physically as well. Another common trait between lazy...

Keto Ultra Reviews Not only do you have to eat the correct way but you need to ...

amyrlewis

•5 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2019

ET (confirmed) and fibrosis grade

Lost driving licence

ET and surgery

WEIGHT LOSS????

Balance

Balance

Blood sister

Sunshine alert

JUST DIAGNOSED-ET

Sore ears

Sickness

No mutant burden

Hydroxy

Trying to get info on JAK 2 mutant allele burden

reflexology

Muscle cramps

Thank you

First Hydroxy

Pegasys interferon shortage

Sunblock update

Sharp pain on forearm when touched, is this ET symptom?

Non caring attitude of doctors.

Remission with peg interferon

To people not receiving treatment for their MPN what are your symptoms that you are immunocompromised?

For my MPN friends

Advice

How to get rid of that dark spot ?

Platlet count

Can folic acid cause a raise in platelets?

Keto Ultra Reviews

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