Posts - MPN Voice | HealthUnlocked

MPN Voice

10,427 members • 14,368 posts

All posts for September 2013

Hi, I'm new on here, though not to mpd - was diagnosed in 1988. PRV Jak2+. I seem to have lost contact with mpd forums , anyone know dates?

•11 years ago

Polycythemia Is it possible to tell if the condition is worsening or staying the same?

Hi All I was diagnosed with primary Polycythemia with a Jak2 positive test (July 2012) I have had 12 lots of blood taken (12x480ml 1 per week) after diagnoses...

Hi All I was diagnosed with primary Polycythemia with a Jak2 positive test (July...

•11 years ago

I was diagnosed with ET on 19/08/2013, by haemotologist, he told me my platelets have been high for 2 yrs. My GP did nothing!! Can I sue?

Is this clinical negligence by my GP? If so, what should I do about it? I would really appreciate any advice on this. smp1046

Is this clinical negligence by my GP? If so, what should I do about it? I would...

•11 years ago

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Reminders!

Hi, I have been diagnosed with PV for over a year now and was at a pre admission assessment clinic as I have two orthopaedic ops to go through in October and...

Hi, I have been diagnosed with PV for over a year now and was at a pre admission...

•11 years ago

I've been on hydroxycarbamide for 3 mths now with dose 1.5 g a day. My mouth is full of ulcers and sore. Help! What helps please?

•11 years ago

When diagnosed with PV 2 months ago my husband was told he wasn't that bad as it had been found early..we are now up to 4x500mg tablets day

This seems a lot in view of what others are saying..no other treatment except aspirin. What do others think?

This seems a lot in view of what others are saying..no other treatment except as...

•11 years ago

My husband diagnosed with PV 2 months ago being treated with Hydera (4x500 a day) .He says his head is foggy during the day .anyone else?

He has also gone very light headed on a few occasions too

He has also gone very light headed on a few occasions too

•11 years ago

My daughter is running in the Junior Great North run today, she is running for Leukaemia and Blood Cancers.

http://www.justgiving.com/Nicola-Clarke5 If you would like to make a donation please visit her just giving page Thank You.

http://www.justgiving.com/Nicola-Clarke5 If you would like to make a donation pl...

•11 years ago

MPD London Forum

I attended my very first MPD forum this evening. I met some really lovely people there. Tonight I was able to talk to people who 'get me' who really understand...

I attended my very first MPD forum this evening. I met some really lovely people...

•11 years ago

Does everyone feel that their hematologist understands PRV, or, just treats the main symptoms with no true idea of the many side effects?

Why I ask this is I have been diagnosed PRV Jak 2 positive since February 2012 and up 'til two days ago had only seen one consultant who had treated me with...

Why I ask this is I have been diagnosed PRV Jak 2 positive since February 2012 a...

•11 years ago

Bone marrow biopsy

Hi all, I had my first bone marrow biopsy today. I was extremely anxious after reading lots on the Internet and watching one on you tube. I had gas and air...

Hi all, I had my first bone marrow biopsy today. I was extremely anxious after ...

•11 years ago

Excessive Sweats and Leg Pain

Husband came out of hospital being told had patellar tendonitis and no information re the hot flushes/sweats. Asked our GP to run hormone test and it shows...

Husband came out of hospital being told had patellar tendonitis and no informati...

•11 years ago

Iron deficiency...

Hi, I've just read Aime's question re. iron rich foods etc & the reply. Does anybody have any answers to the same question for those (with PV) on...

Hi, I've just read Aime's question re. iron rich foods etc & the reply. Does any...

•11 years ago

Is it safe to eat iron rich foods whilst being iron deficient due to venesections for PV?

My PV is controlled only by venesections. I am now suffering fatigue because the venesections have now got the hematocrit down to below .45 but I have become...

My PV is controlled only by venesections. I am now suffering fatigue because th...

•11 years ago

Is anyone with PV on interferon?

I had a stroke last year and was diagnosed with PV. I have been on hydroxycarbamide for the past 18 months which has been no problem, apart from mouth ulcers,...

I had a stroke last year and was diagnosed with PV. I have been on hydroxycarbam...

•11 years ago

Which drug

Hi All, I am one of the fortunate ones and not taking any medication yet, however the platelets are slowly creeping up and it is just a matter of time before...

Hi All, I am one of the fortunate ones and not taking any medication yet, howev...

•11 years ago

Had enough

I've had et for about 4 years, diagnosed anyway. I've always just got on with it although I've had some symptoms. For the last six months or so I have had...

I've had et for about 4 years, diagnosed anyway. I've always just got on with it...

•11 years ago