Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2017

NF2 neuroma and Lyrica and scoliosis do not mix!!

I have a neuroma on my spine, and have been given Lyrica, for a pain killer, after a week, I have decided to stop due to pain caused by scoliosis, the...

I have a neuroma on my spine, and have been given Lyrica, for a pain killer, aft...

Adlon57

•7 years ago

3 Replies

Matched with others

Thank you to everyone who replied to matched with others. It was lovely to receive your messages. Just to say to everyone that right now I'm on my fourth...

Thank you to everyone who replied to matched with others. It was lovely to rece...

Garden987

•7 years ago

3 Replies

Rewolf

I'm new diagnosed in January 2017

Rewolf

•7 years ago

8 Replies

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Polcythemia Questions and concerns... Need answers!!!

Hello my name is Tosha was diagnosed with PV November 2015, had alot of symptoms related to this and never was treated. I did research on this and found out...

Hello my name is Tosha was diagnosed with PV November 2015, had alot of symptoms...

Toshabeatthis

•7 years ago

7 Replies

Has anybody had..........?

Has anybody had a bowel cancer screening test come back positive? I sent mine back last week and got a letter today to say it was abnormal and I have an...

Has anybody had a bowel cancer screening test come back positive? I sent mine ba...

lizzziep

•7 years ago

15 Replies

Reminder- MPN Genetics Webinar

What do genes, ones you inherit or ones that go awry, have to do with developing an MPN? Find out TOMORROW 1:00pm Pacific (3:00pm Central; 4:00pm Eastern in...

What do genes, ones you inherit or ones that go awry, have to do with developing...

tclementi

•7 years ago

Be the first to reply

So fed up.

Am I frustrated, YES. Had no problem in the past getting holiday insurance for my MPN , Phoned bank today as thought we might get a wee break to Turkey. Big no...

Am I frustrated, YES. Had no problem in the past getting holiday insurance for m...

fannetastic

•7 years ago

11 Replies

Thought you might like to see the early results of my new lifestyle .

Try giving up a tea or coffee have juice and fresh fruit instead of that cream cake ....

Try giving up a tea or coffee have juice and fresh fruit instead of that cream c...

Twinkly

•7 years ago

4 Replies

4 years on the trial drug ruxulitnib..feeling fine ..

Since I made the decision to eat healthy ,clean up my bad habits of sugar and fat , Gave up red meat and all processed ,tinned food ,and ready meals ,my life...

Since I made the decision to eat healthy ,clean up my bad habits of sugar and fa...

Twinkly

•7 years ago

6 Replies

Connecting with others

To connect bot. Am having trouble replying to your questions. Started sending replies but obviously don't know what I'm doing. Can't get beyond your first...

To connect bot. Am having trouble replying to your questions. Started sending ...

Garden987

•7 years ago

1 Reply

Omeprazole and Ruxolitinib

Hi all I have recently been changing from Hadroxycarbomide to Ruxolitinib. I also take lots of other drugs including 'omeprazole'. The problem I have is that...

Hi all I have recently been changing from Hadroxycarbomide to Ruxolitinib. I als...

dave117

•7 years ago

8 Replies

Matched with others

I've received several emails from people I've been matched with. Have attempted to follow link but have messed up. Help please!

I've received several emails from people I've been matched with. Have attempted...

Garden987

•7 years ago

1 Reply

Aspirin and hair thinning?

Hello I'm hoping someone can help me. I have ET and PV JAK2+ I have been diagnosed since sept 16 and have been on Aspirin since. I have recently noticed that...

Hello I'm hoping someone can help me. I have ET and PV JAK2+ I have been diagnos...

Jacquis

•7 years ago

15 Replies

Hot weather

Hi everyone. We are all suffering from the heat and from what you say it is not helped by our condition and meds. My own solution is to draw the curtains,put...

Hi everyone. We are all suffering from the heat and from what you say it is not...

Garden987

•7 years ago

18 Replies

Critical illness

So got word today saying my insurers are paying out and that after reading my medical report they are back dating it to Aug 2015when I also had a stroke....

So got word today saying my insurers are paying out and that after reading my me...

Mummyto4c

•7 years ago

4 Replies

This hot weather... affects us ?

Hi my friends , woke up in a hot sweat last night. had yet another bout of tum upset, seems to happen every few weeks or so ! im very. careful when our...

Hi my friends , woke up in a hot sweat last night. had yet another bout of tum ...

catwoman2015

•7 years ago

14 Replies

Blocked Vein in eye

I thought I would ask if anyone else has had a similar problem: I have had a blocked vein in my left eye which has badly affected the sight in it. I am...

I thought I would ask if anyone else has had a similar problem: I have had a blo...

Mwalimu

•7 years ago

5 Replies

Any ET (CALR+) Hematologist experts in the US?

I see a lot of posts about how wonderful Guy's is for treatment. Is there anything comparable in the US? I am willing to travel for the best care. I live in...

I see a lot of posts about how wonderful Guy's is for treatment. Is there anythi...

2017S

•7 years ago

7 Replies

Recently diagnosed with ET (CALR+)

Hi, I'm new on here. I just turned 40 and have been diagnosed with ET (CALR+) It's very scary. What does the CALR mutation produce in the body? I found out...

Hi, I'm new on here. I just turned 40 and have been diagnosed with ET (CALR+) It...

2017S

•7 years ago

10 Replies

Importance of regular dental checks

I got my appointment with the oral surgery dept 2 weeks ago and had x-rays of my teeth. This week I saw the dental nurse who started the removal of tartar. I...

I got my appointment with the oral surgery dept 2 weeks ago and had x-rays of my...

jillydabrat

•7 years ago

29 Replies

Platelets on health program radio 4 yesterday

Did anyone hear the health program on radio 4 yesterday about high platelets. It is now being used as a test by GPs as there is a high percentage if platelets...

Did anyone hear the health program on radio 4 yesterday about high platelets. It...

Melaniem59

•7 years ago

12 Replies

Can you get back to '100%' after an SCT ?

Are there any fellow SCT/BMT ers out there with an opinion/first hand experience?Firstly the good news, I had an SCT almost 2yrs ago and the worst of my GvHD...

Are there any fellow SCT/BMT ers out there with an opinion/first hand experience...

crapaud

•7 years ago

10 Replies

GOUT!!

Hi, does anybody with ET suffer with gout? I seem to be getting more and more attacks of gout as time goes on! Michael

Hi, does anybody with ET suffer with gout? I seem to be getting more and more at...

retromicky

•7 years ago

14 Replies

Platlets gone down.

Hey good news today my platlets have dropped slightly from 1003 to 983 only a slight difference but it’s the first time they’ve dropped since I was diagnosed...

Hey good news today my platlets have dropped slightly from 1003 to 983 only a sl...

Jasbak22

•7 years ago

13 Replies

Suej1968

I have had ET fourteen years and I was told by my haematologist that as I take my medication my life expectancy will be the same as anyone else. It took a few...

I have had ET fourteen years and I was told by my haematologist that as I take m...

Coradelphine

•7 years ago

8 Replies

FUND RAISING FOR MPN VOICE - a free weekend in the Lakes.

Morning all! So, who's up for a weekend in the Lakes all accommodation, transport ( except travelling to and from the Lakes ) and food ( with exception of any...

Morning all! So, who's up for a weekend in the Lakes all accommodation, transpor...

Loubprv

Volunteer•7 years ago

7 Replies

Does anyone else have to log in with their user name and and password EVERY time they would like to reply to a post?

Hi Small question as above. Drives me potty - why isn't there a " remember me " box to tick? Louise xoops sorry pic on it's side.

Hi Small question as above. Drives me potty - why isn't there a " remember me " ...

Loubprv

Volunteer•7 years ago

7 Replies

Sliced Bread & Iron Additives - Not the The best thing since?

Hi all, I have PV, JAK2+ and on Hydroxy and Aspirin with the odd Venesection when needed. In order to maintain my HCT (Haematocrit) at my target level, i...

Hi all, I have PV, JAK2+ and on Hydroxy and Aspirin with the odd Venesection whe...

Dubmatix

•7 years ago

7 Replies

PV Jak2

I was diagnosed in April & have had venesection almost every week until 3 weeks ago, having blood tests again this week & seeing the consultant on...

I was diagnosed in April & have had venesection almost every week until 3 weeks ...

Sueworthington

•7 years ago

20 Replies

Not happy with care

I am not happy with the care I'm getting at the moment at my local hospital and was wonder how I can get referred to a specialist in MPN. I not far from...

I am not happy with the care I'm getting at the moment at my local hospital and ...

sjdard

•7 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2017

NF2 neuroma and Lyrica and scoliosis do not mix!!

Matched with others

Rewolf

Polcythemia Questions and concerns... Need answers!!!

Has anybody had..........?

Reminder- MPN Genetics Webinar

So fed up.

Thought you might like to see the early results of my new lifestyle .

4 years on the trial drug ruxulitnib..feeling fine ..

Connecting with others

Omeprazole and Ruxolitinib

Matched with others

Aspirin and hair thinning?

Hot weather

Critical illness

This hot weather... affects us ?

Blocked Vein in eye

Any ET (CALR+) Hematologist experts in the US?

Recently diagnosed with ET (CALR+)

Importance of regular dental checks

Platelets on health program radio 4 yesterday

Can you get back to '100%' after an SCT ?

GOUT!!

Platlets gone down.

Suej1968

FUND RAISING FOR MPN VOICE - a free weekend in the Lakes.

Does anyone else have to log in with their user name and and password EVERY time they would like to reply to a post?

Sliced Bread & Iron Additives - Not the The best thing since?

PV Jak2

Not happy with care

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