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MPN Voice

10,445 members • 14,398 posts

All posts for February 2021

Et and pins and needles

Does anyone ever get pins and needles in legs or arms at night. Am starting to worry it means my blood isn't flowing and it will clot

Does anyone ever get pins and needles in legs or arms at night. Am starting to w...

Irishgal12

•3 years ago

12 Replies

Jak2 Testing

Hi, I just wanted to share my experience being tested for Jak2 mutation. I was tested for multiple diseases after my first stroke in 2010. No one could figure...

Hi, I just wanted to share my experience being tested for Jak2 mutation. I was ...

Royalblue9

•3 years ago

2 Replies

Accident or Chance

Greetings to all, I have ET, Jak2 pos, multi. stroke (4, and a MIA) 1st stroke 2010, at age 51, diagnosed: 2019. Had my latest stroke in Nov. (5th) This is my...

Greetings to all, I have ET, Jak2 pos, multi. stroke (4, and a MIA) 1st stroke 2...

Royalblue9

•3 years ago

4 Replies

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Bleeding gums

I’ve had bleeding gums on and off for years, dentist said due to ET and medication. But lately the bleeding has got a lot worse, one day I even had a couple of...

I’ve had bleeding gums on and off for years, dentist said due to ET and medicati...

lizzziep

•3 years ago

25 Replies

Vaccine efficacy for immune compromised?

Hello all ~ yet another Covid-19 question. AARP just sent a message containing, among other facts about the vaccine, a reminder that immune compromised people...

Hello all ~ yet another Covid-19 question. AARP just sent a message containing, ...

BluePeony

•3 years ago

19 Replies

Murdoch01

I have ET JAC 2 positive and had a blood clot in my lung in 2018, since then on Apixaban. First 5mg twice a day for 6 months then 2 and a half mg twice a day....

I have ET JAC 2 positive and had a blood clot in my lung in 2018, since then on ...

Murdoch01

•3 years ago

4 Replies

Waiting call from haematologist

I joined this forum because I am waiting for a call from a haematologist with my gene mutation results. Was referred initially with elevated platelets on three...

I joined this forum because I am waiting for a call from a haematologist with my...

Fuggers

•3 years ago

11 Replies

Covid vaccine

My issue may not be linked to the vaccine. I had my vaccine on 13th February . Anyone else having issues with spiking heart rate (196pbm). This started...

My issue may not be linked to the vaccine. I had my vaccine on 13th February . ...

EleanorPV

•3 years ago

12 Replies

Vaccine- saga continues

Hi all not posted for a while as had a cold which knocked me for six but also my fight for the vaccine continues. I finally received the govt email saying...

Hi all not posted for a while as had a cold which knocked me for six but also my...

Jlah

•3 years ago

9 Replies

Report button

Maz. Is there anyway we can have a link or something that allows us to flag up a hostile post/response to a post. The people who contribute on here are largely...

Maz. Is there anyway we can have a link or something that allows us to flag up a...

Jlah

•3 years ago

4 Replies

Any ideas on Covid risks folks?

I'm sure many of you will have seen the research paper issued by Blood Cancer UK (How dangerous is Covid-19 for people with blood cancer?) along with...

I'm sure many of you will have seen the research paper issued by Blood Cancer UK...

Ovingite

•3 years ago

22 Replies

QCovid risk calculator

“This implementation of the QCovid risk calculator is NOT intended for use supporting or informing clinical decision-making. It is ONLY to be used for academic...

“This implementation of the QCovid risk calculator is NOT intended for use suppo...

Manouche

•3 years ago

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What to do about increasing side effects.

I have been to l that lm on lifelong warfrin and now feel intimidated by my GP to complain about severe side effects,extrem body chills and burning on...

I have been to l that lm on lifelong warfrin and now feel intimidated by my GP ...

Hidden

•3 years ago

5 Replies

Pegasys

Been on Pegasys 135mg for about 3 years.. My bloods are ok, vastly reduced Hydro from 17 pills a week to 3. Over the last 2 years I have developed a cough,...

Been on Pegasys 135mg for about 3 years.. My bloods are ok, vastly reduced Hy...

shiftzz

•3 years ago

7 Replies

Anti inflammatory eating..

Morning.. I am a MF patient, (52 working full time), and for a while have been interested in how nutrition can help me. I can be very good about a varied...

Morning.. I am a MF patient, (52 working full time), and for a while have been ...

Mrs_Average

•3 years ago

14 Replies

MPN specialist says I “most likely do not have ET” and is not mandating BMB - need your thoughts

30 years old. Platelets elevated for around 10 years. All other blood counts are normal. No anemia. No inflammation or infection. Platelet counts 2008 (Age...

30 years old. Platelets elevated for around 10 years. All other blood counts are...

cmc_ufl

•3 years ago

35 Replies

Priority for Vaccine

A big thank you for posting the link to the Letter for your GP regarding priority for the vaccine . I sent to my GP on Monday and received my first jab tonight...

A big thank you for posting the link to the Letter for your GP regarding priorit...

Muchalls

•3 years ago

3 Replies

When to alert the doctor?

How do people determine if a new symptom is worth reporting to the doctor or if it is just business as usual? I have been recently diagnosed with ET +JAK2...

How do people determine if a new symptom is worth reporting to the doctor or if...

nightshadow

•3 years ago

5 Replies

ET OR MYELOFIBROSIS

Hi! I am new to this. You guys Who have ET, did you have any raising levels in LDH? Or anything else other than high platelets? How is the prognosis with...

Hi! I am new to this. You guys Who have ET, did you have any raising levels in L...

Johan2021

•3 years ago

11 Replies

Covid vaccine

Hi can anyone tell me how to book vaccination , when I go on swiftqueue it won’t let me book because of my age .Thanks

Hi can anyone tell me how to book vaccination , when I go on swiftqueue it won’t...

Lizzy19

•3 years ago

2 Replies

Antibody test post vaccine

I did an antibody test 20 days after my Oxford jab. The threshold is 0.8 and I scored 2.1 so confirmed antibodies. I know someone who is a lead immunologist...

I did an antibody test 20 days after my Oxford jab. The threshold is 0.8 and I s...

Paul123456

•3 years ago

28 Replies

SYDNEY TO COFFS HARBOUR RIDE UPDATE

Post by MPN-MATE Admin » Fri Feb 19, 2021 6:34 pm Evening all... :D Just a quick Update to assure everyone that this RIDE is all booked in from APRIL 10-17,...

Post by MPN-MATE Admin » Fri Feb 19, 2021 6:34 pm Evening all... :D Just a qu...

socrates_8

•3 years ago

17 Replies

update after seeing a specialist

Its been awhile so I just wanted to give an update and maybe I can help someone else. I was diagnosed back in September with ET CALR type 1. I was...

Its been awhile so I just wanted to give an update and maybe I can help someone ...

mother2britton

•3 years ago

2 Replies

All driver mutations negative

Finally meeting with my MPN specialist tomorrow. He called me today and told me my tests for JAK2, CALR, and MPL all came back negative. I am not sure whether...

Finally meeting with my MPN specialist tomorrow. He called me today and told me ...

cmc_ufl

•3 years ago

13 Replies

Treatment options, location.

Does anyone have a definitive list of counties in the UK that prescribe peg interferon on the NHS without having to aquire funding. It's a lottery as to...

Does anyone have a definitive list of counties in the UK that prescribe peg inte...

conno61

•3 years ago

16 Replies

Dickensian Christmas Project 2

I don’t know how to put two photos on so sorry for the two posts

jillydabrat

•3 years ago

15 Replies

Dickensian Christmas project 1

I have done baby clothes until I am sick to death of them so I am starting a Christmas project, Dickensian Mice, which will include Carol singing mice, mice...

I have done baby clothes until I am sick to death of them so I am starting a Chr...

jillydabrat

•3 years ago

23 Replies

Jak2 Negative with Suppressed EPO

Does anyone have any experience of increased Hb (195 - I'm a 40 year old female) which resulted in having several more tests done. My Jak2 came back as...

Does anyone have any experience of increased Hb (195 - I'm a 40 year old female)...

mkentish

•3 years ago

10 Replies

cholinergic urticaria (allergic to heat or cold/hives on temperature change)

About 10-15 years ago, I suffered from cholinergic urticaria upon temperature. I recall breaking out in hives if I walked into a heavily airconditioned space...

About 10-15 years ago, I suffered from cholinergic urticaria upon temperature. ...

Purple478273

•3 years ago

5 Replies

Clear simple article on good diet plan

https://www.pvreporter.com/wp-content/uploads/2019/07/Diet-Nutrition-Myeloproliferative-Neoplasm-MPN-Patient.pdf I thought the above link was well presented...

https://www.pvreporter.com/wp-content/uploads/2019/07/Diet-Nutrition-Myeloprolif...

Mostew

•3 years ago

15 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2021

Et and pins and needles

Jak2 Testing

Accident or Chance

Bleeding gums

Vaccine efficacy for immune compromised?

Murdoch01

Waiting call from haematologist

Covid vaccine

Vaccine- saga continues

Report button

Any ideas on Covid risks folks?

QCovid risk calculator

What to do about increasing side effects.

Pegasys

Anti inflammatory eating..

MPN specialist says I “most likely do not have ET” and is not mandating BMB - need your thoughts

Priority for Vaccine

When to alert the doctor?

ET OR MYELOFIBROSIS

Covid vaccine

Antibody test post vaccine

SYDNEY TO COFFS HARBOUR RIDE UPDATE

update after seeing a specialist

All driver mutations negative

Treatment options, location.

Dickensian Christmas Project 2

Dickensian Christmas project 1

Jak2 Negative with Suppressed EPO

cholinergic urticaria (allergic to heat or cold/hives on temperature change)

Clear simple article on good diet plan

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