Posts - MPN Voice | HealthUnlocked

MPN Voice

10,439 members • 14,387 posts

All posts for April 2017

Palpitations

Hi everyone i have been on Anagrelide and Asiprin for 8 weeks, but the last week I have had awful palpitations and a racing heart. Does anyone else experience...

Hi everyone i have been on Anagrelide and Asiprin for 8 weeks, but the last week...

•7 years ago

Hydroxy and fainting

I have been on Hydroxy for two weeks and have had two episodes of fainting and dry vomiting - has anyone else experienced this? We had to cancel flights as I...

I have been on Hydroxy for two weeks and have had two episodes of fainting and d...

•7 years ago

The MPN Voice Living with MPNs Day

Saturday 18th November 2017, 8.45 am – 5 pm BMA House, British Medical Association, Tavistock Square, London, WC1H 9JP This will be the 4th...

Saturday 18th November 2017, 8.45 am – 5 pm BMA House, British Medical Associati...

Partner•7 years ago

Want to take advantage of all our features? Just log in!

or

Blood clot

Hi, been breathless for a while and ended up in hospital with a diagnosis of a blood clot on the lung. Quite scary, I just thought my breathlessness was due...

Hi, been breathless for a while and ended up in hospital with a diagnosis of a b...

•7 years ago

MF and bone marrow transplant

Had another hospital appointment today and to our shock and horror Steve is now going to be fast tracked for a bone marrow transplant. His symptoms have...

Had another hospital appointment today and to our shock and horror Steve is now ...

•7 years ago

PRV stabilisation question

Hi.. I'm interested to hear from PRV patients who are now more stabilised using venesections to understand if you still suffer from the same fatigue still or...

Hi.. I'm interested to hear from PRV patients who are now more stabilised using ...

•7 years ago

Scoliosis

I had a growth/neuroma on my spine, removed 1997, first diagnosed 1995, but because of that I have scoliosis which seems to have worsened over the years. I...

I had a growth/neuroma on my spine, removed 1997, first diagnosed 1995, but beca...

•7 years ago

How do we cope with the hot sunny days ? I think my thermostat has packed up !!

When the weathers cold I get stiff in the joints ,and my feet get numb with circulation problems .T hen when the tempreture rises I get hotter and hotter and...

When the weathers cold I get stiff in the joints ,and my feet get numb with circ...

•7 years ago

Persistent symptoms even when HCT is OK?

Hi everyone Since September 2016 I have had constant PRV symptoms - Severe pruritus, headache, fatigue, joint aches and bruising easily. Even when my HCT level...

Hi everyone Since September 2016 I have had constant PRV symptoms - Severe pruri...

•7 years ago

NHS sick leave ?

Hi MPN family Can anyone offer advice how the NHS view MPN and sick leave ? I know it's 6 months full pay then 6 months half pay. I had two months off in...

Hi MPN family Can anyone offer advice how the NHS view MPN and sick leave ? I kn...

•7 years ago

Ruth's journey

Hello all, after I started our family, we all noticed that my hands and whole body were shaking. Well since this all started 29 years ago I have seen over 10...

Hello all, after I started our family, we all noticed that my hands and whole bo...

•7 years ago

ginger garlic and aspirin

Hello, I had a scare about 2 weeks ago and thought I was having a heart attack. But the hospital said was a Panic attack. My family doctor told me to take 80...

Hello, I had a scare about 2 weeks ago and thought I was having a heart attack. ...

•7 years ago

LBH?

Hi all I hope the sun is shining in your part of the country. I have been looking at my results and comparing them over the last few months. I was diagnosed...

Hi all I hope the sun is shining in your part of the country. I have been lookin...

•7 years ago

Feeling indecisive

Morning everyone... Hmmm I'm not quite sure what this post is going to be yet .. I am feeling very anxious. I hate it when l get like this ( not as often as I...

Morning everyone... Hmmm I'm not quite sure what this post is going to be yet .....

•7 years ago

How often should platelets be checked ?

Hi everyone, I was just wondering how often my hematologist should be taking bloods to monitor my platelets ? Last one was 1124 Thanks for help lainy

Hi everyone, I was just wondering how often my hematologist should be taking blo...

•7 years ago

Just started on Hydroxycarbamide.

After fruitless injections of Erythropoietin, which did nothing to raise my HB of 86, my Haemotologist has just started me on Hydroxy, as my white cell count...

After fruitless injections of Erythropoietin, which did nothing to raise my HB o...

•7 years ago

Blood test result question

I recently had a CBC--again--and there was a result I wasn't familiar with. I didn't see it on my list until I got home and the doc didn't mention it....

I recently had a CBC--again--and there was a result I wasn't familiar with. I d...

•7 years ago

Should I be asking for ruxolitinib?

My haematologist said the long term plan was to get me on Ruxolitinib and I'm wondering whether I should be pushing for it or just leaving it to his judgement....

My haematologist said the long term plan was to get me on Ruxolitinib and I'm wo...

•7 years ago

Forehead & skull shape

Hi m sherry 32 age My forehead & skull shape changed from square to oval shape & it looks very ugly. Which type of tests you recomended & wht type of disease...

Hi m sherry 32 age My forehead & skull shape changed from square to oval shape ...

•7 years ago

Hi all twinkly here ..new knee news !!

Hello everybody out there ...I'm back twinkly here .iv been recovering from a total knee replacement surgery ,but I'm better now ! I managed to stick to my...

Hello everybody out there ...I'm back twinkly here .iv been recovering from a to...

•7 years ago

treatment refusal ruxolitinib

HI, my partner was diagnosed with primary mf at the beginning of January. He was categorised as low risk. His first scan in February showed a spleen size of...

HI, my partner was diagnosed with primary mf at the beginning of January. He wa...

•7 years ago

Living Well with MPN

Patient Power kicking off a "Living Well with MPNs" series next Friday, April 14th. Watch LIVE online as our expert panel featuring Dr. Laura Michaelis and...

Patient Power kicking off a "Living Well with MPNs" series next Friday, April 14...

•7 years ago

Be the first to reply

Early retirement

Hi Guys, I know some of you have already gone down the route of early retirement and wondered what your experiences had been. Between my PV and osteoarthritis...

Hi Guys, I know some of you have already gone down the route of early retirement...

•7 years ago

Missed our Lab Test Results Webinar? Watch The Replay Here!

Hi all, Patient Power held a webinar last week about lab test results and if you weren't able to watch it live or want to watch it again, the replay is now...

Hi all, Patient Power held a webinar last week about lab test results and if yo...

•7 years ago

1
2