Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for April 2018

Boron

From MNP-Net. Need to eat avocados, nuts and raisins plus usual healthy diet of veg and fruit. A handful of nuts per day also adds selenium and magnesium, both...

From MNP-Net. Need to eat avocados, nuts and raisins plus usual healthy diet of ...

•6 years ago

Dire

At my wit's end with no energy, leg and other pain, dreadful gastric reflux because I took brufen to try and reduce leg pain. Have MF and hoped for say 5 years...

At my wit's end with no energy, leg and other pain, dreadful gastric reflux beca...

•6 years ago

Heavy arms!

Hi Guys, I have PV and I just wondered if anyone else is bothered with arms which feel so heavy and weak that I’m struggling to hold a newspaper for longer...

Hi Guys, I have PV and I just wondered if anyone else is bothered with arms whic...

•6 years ago

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Oh no here we go again

Still waiting for my official diagnosis of suspected PV. (Hopefully next week) and the terrible pains in my thigh bones have started again tonight 😢 What do...

Still waiting for my official diagnosis of suspected PV. (Hopefully next week) a...

•6 years ago

Over 20 years.

Just wondering if anyone has had ET longer than 20 years? If so, what did you experience over this time? How did the disease progress? What changed for you...

Just wondering if anyone has had ET longer than 20 years? If so, what did you ex...

•6 years ago

Scared

Hi i am 43 years old i have had a pain under my left top rib cage along with ringing in my ears and my vision has also changed ive had these symptoms for about...

Hi i am 43 years old i have had a pain under my left top rib cage along with rin...

•6 years ago

Was wondering if anybody with ET has had success with naturopathic help

Hi folks. Been on here a while, but never posted. Got diagnosed with Essential Thrombocytosis back in Nov 2017, and put on 1000mg of Hydroxyurea per day. At...

Hi folks. Been on here a while, but never posted. Got diagnosed with Essential T...

•6 years ago

PV and repeated infections

Hi everybody. I have had PV for nearly 4 years and been on HU for 18 months. My bloods are under control. I take 500 mgs HU Monday to Friday and have no...

Hi everybody. I have had PV for nearly 4 years and been on HU for 18 months. M...

•6 years ago

ET CAL-R + Prickly sensation on skin increasing

My platelets are now on 990, I've been suffering with painful prickly sensation on my skin for a couple of weeks now, whenever any thing touches my skin, even...

My platelets are now on 990, I've been suffering with painful prickly sensation ...

•6 years ago

Dealing with ET of a parent

Hi All, I hope you don’t mind me being part of this group...my dad was diagnosed with ET a couple of years ago. We were told not to worry and life goes on....

Hi All, I hope you don’t mind me being part of this group...my dad was diagnose...

•6 years ago

ASXL1 gene detected

Hey guys... :) Trust you are all coping well with your MPNs, and if you are not... then I hope you will be again shortly... It seems to me that it comes &...

Hey guys... :) Trust you are all coping well with your MPNs, and if you are not...

•6 years ago

Let me introduce myself

Hello, we live in the small town of Madeira Park in Pender Harbour BC, I have been recently diagnosed with Primary MF Jak2 positive and am on Hydroxyurea. I...

Hello, we live in the small town of Madeira Park in Pender Harbour BC, I have be...

•6 years ago

On Hydroxycarbamide with ET can I have aesthetic procedures

Hi diagnosed with ET last year and received a voucher for 50th birthday and wondered if I can have a non surgical aesthetic procedure? Thanks Karen

Hi diagnosed with ET last year and received a voucher for 50th birthday and wond...

•6 years ago

Et with elevated White blood count

hello everyone， Yesterday I visited my haemotologist after 3 months.Platelets were same, 1006 （only on plavix）, but white blood cells count was 14 （normal...

hello everyone， Yesterday I visited my haemotologist after 3 months.Platelets we...

•6 years ago

For mpn information lovers pt 2

Hi all The link I just gave to the mpn reseach foundation may not have targeted the MPN information kit that the mpn reseach foundation put out. This one...

Hi all The link I just gave to the mpn reseach foundation may not have targeted ...

Rachelthepotter

•6 years ago

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MPN Information source for fellow information lovers

Hi. This is a link to the MPN information kit put out by the MPN Research Foundation Good stuff, and kept up to date. Their main website has links to lots of...

Hi. This is a link to the MPN information kit put out by the MPN Research Founda...

Rachelthepotter

•6 years ago

Could PV affect speech?

I have posted before about suspected TIA, well my speech is still bad with slurring and not being able to get the words to come out. I am wondering if my PV...

I have posted before about suspected TIA, well my speech is still bad with slurr...

•6 years ago

Haematologist tomorrow, first time in 14 months

Hi everyone. I have ET jak -ve, diagnosed about 3 years ago. I just take aspirin. I also have neurofibromatosis type 1, with many serious complications. I know...

Hi everyone. I have ET jak -ve, diagnosed about 3 years ago. I just take aspirin...

•6 years ago

Jak2+ ET. MPN

Recently I have been diagnosed with ET AND JAK2+. I am on baby aspirin twice daily. I have had a few times ringing in my ears also I am beginning to get...

Recently I have been diagnosed with ET AND JAK2+. I am on baby aspirin twice dai...

•6 years ago

Hair loss on Hydroxy

Hi Guys, has anybody else, who uses Hydroxy, noticed a marked thinning and loss of hair. I noticed this morning after I had washed my hair that it is...

Hi Guys, has anybody else, who uses Hydroxy, noticed a marked thinning and loss...

•6 years ago

ET CALR mutation mail 53y.o.

Been diagnosed 2005 with ET CALR MUTATION. Today 53 y.o. 1250 platelet count. No meds! Thinking trying pegasys. Heard that it is the best old stuff for.......

Been diagnosed 2005 with ET CALR MUTATION. Today 53 y.o. 1250 platelet count. No...

•6 years ago

I would love an mpn buddy!

Hello. I am waiting to be properly diagnosed with ET. I am jak2 negative and waiting on results for other general tests. I have an appointment with my...

Hello. I am waiting to be properly diagnosed with ET. I am jak2 negative and wai...

•6 years ago

ACCEPTED ET and LIVING WITH IT 🌺😇🌺

Hi Friends, 03 April 2018 There are things and situations that come to us, out of our control and not our choices in life. But what to do with...

Hi Friends, 03 April 2018 There are things and situations that ...

•6 years ago

Curiosity may kill the cat but I want to know.

When I had my BMB done it showed mild fibrosis. What exactly does that mean to one with ET and does anyone else have this?

When I had my BMB done it showed mild fibrosis. What exactly does that mean to o...

•6 years ago

Is it just me, or has this disease taken over my life? Problems since being diagnosed.

Since I was diagnosed in early 2014 so many things have changed for me personally. I never had any health issues prior to having ET. Am I just down on luck or...

Since I was diagnosed in early 2014 so many things have changed for me personall...

•6 years ago

ET since 2014

I was diagnosed in 2014 with ET and I'm new to this board. Just looking to connect with others and maybe get a few answers along the way. ET, JAK2+, Hydrea...

I was diagnosed in 2014 with ET and I'm new to this board. Just looking to conne...

•6 years ago

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