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Experiences with
Polycythaemia
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Visit to Rheumatologist
Thankfully I have the support of the Macmillan Nurse for my
Polycythaemia
which I was diagnosed with 12 months ago. I have had GCA for 8 years and lost the sight of my left eye. I forgot to mention that my blood pressure when I visited him was 109/65. Nurse thought this was very low.
Thankfully I have the support of the Macmillan Nurse for my
Polycythaemia
which I was diagnosed with 12 months ago. I have had GCA for 8 years and lost the sight of my left eye. I forgot to mention that my blood pressure when I visited him was 109/65. Nurse thought this was very low.
Heather270240
in
PMRGCAuk
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 18 months 6 weeks ago i was told by the hospital that my blood tests indicate i may have
polycythaemia
vera and was told i need another special
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 18 months 6 weeks ago i was told by the hospital that my blood tests indicate i may have
polycythaemia
vera and was told i need another special
Bigshuffy
in
MPN Voice
6 years ago
Newly diagnosed as Polycythaemia, possibly relative.
Hi, Does anyone know if this condition causes tinnitus and increasing deafness? Each attack of a severe bout of tinnitus would cause my hearing to drop and never recover back to previous hearing levels. Doctors have no idea what is causing this and called it ideopathic loss. Thank you.
Hi, Does anyone know if this condition causes tinnitus and increasing deafness? Each attack of a severe bout of tinnitus would cause my hearing to drop and never recover back to previous hearing levels. Doctors have no idea what is causing this and called it ideopathic loss. Thank you.
janeandsamsmith
in
MPN Voice
6 years ago
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Haemophilia
Hi I have
Polycythaemia
so am on here from time to time Just been told my two year old grandson has haemophilia! Tried to find a community on here but can’t locate one. Does anyone know if there is one? Thanks folks James
Hi I have
Polycythaemia
so am on here from time to time Just been told my two year old grandson has haemophilia! Tried to find a community on here but can’t locate one. Does anyone know if there is one? Thanks folks James
James53
in
MPN Voice
6 years ago
Itching for years feeling let down.
vere, more blood test confirmed that I do have
polycythaemia
vere, with the JAK 2 mutation. still have venesections weekly at the moment and taking asprin daily.
vere, more blood test confirmed that I do have
polycythaemia
vere, with the JAK 2 mutation. still have venesections weekly at the moment and taking asprin daily.
nannybarb08
in
MPN Voice
6 years ago
Polycythaemia
Hi. I am currently being investigated with polycycthemia. The Jax test was negative but still have the symptoms. I am now waiting for a scan to explore my red blood cells , an RBC Nuclear scan ? My ultrasounds were all fine. Any advice ?
Hi. I am currently being investigated with polycycthemia. The Jax test was negative but still have the symptoms. I am now waiting for a scan to explore my red blood cells , an RBC Nuclear scan ? My ultrasounds were all fine. Any advice ?
Kwebb
in
MPN Voice
7 years ago
Budd Chiari Syndrome
Hello all, Does anyone else on this site have Budd Chiari Syndrome combined with a myeloproliferative disorder such as
polycythaemia
vera? Would love to hear from anyone else with this disorder! Thank you
Hello all, Does anyone else on this site have Budd Chiari Syndrome combined with a myeloproliferative disorder such as
polycythaemia
vera? Would love to hear from anyone else with this disorder! Thank you
Jo3560
in
British Liver Trust
7 years ago
Our available booklets
www.leukaemiacare.org.uk/resources/step-by-step-on-et Step by Step on Hairy Cell Leukaemia - http://www.leukaemiacare.org.uk/resources/step-by-step-on-hairy-cell-leukaemia Step by Step on Myelodysplastic Syndromes - http://www.leukaemiacare.org.uk/resources/step-by-step-on-myelodysplastic-syndromes Step by Step on
Polycythaemia
www.leukaemiacare.org.uk/resources/step-by-step-on-et Step by Step on Hairy Cell Leukaemia - http://www.leukaemiacare.org.uk/resources/step-by-step-on-hairy-cell-leukaemia Step by Step on Myelodysplastic Syndromes - http://www.leukaemiacare.org.uk/resources/step-by-step-on-myelodysplastic-syndromes Step by Step on
Polycythaemia
NicoleLeukaemiaCare
in
Leukaemia Support
8 years ago
FIRST LINE PV SURVEY
We want to hear patients’ views on a new study for patients with
polycythaemia
vera (PV). Researchers in the UK have teamed up with those in France to design a study for patients with PV who need a drug to lower their blood count.
We want to hear patients’ views on a new study for patients with
polycythaemia
vera (PV). Researchers in the UK have teamed up with those in France to design a study for patients with PV who need a drug to lower their blood count.
Mazcd
MPNVoice
in
MPN Voice
8 years ago
Recurring UTIs with Hydroxycarbamide
I have
Polycythaemia
Vera and take Hydroxycarbamide (16 per week). I have extremely painful urinary tract and bladder infections every 3 or 4 months. I have recently read that hydroxycarbamide can cause this which no one has every mentioned to me before.
I have
Polycythaemia
Vera and take Hydroxycarbamide (16 per week). I have extremely painful urinary tract and bladder infections every 3 or 4 months. I have recently read that hydroxycarbamide can cause this which no one has every mentioned to me before.
Hidden
in
MPN Voice
8 years ago
Hi here , male 63 with fibro and sticky Blood
Hi folks hope I'm on the right forum , I was diagnosed with fibro some 10:years ago, I have just been through hell and back with extreme Fatigue blurry eyes , dry mouth My gp had bloods done and thinks it
Polycythaemia
as my red BC count was high he thinks I might need to give blood in the hope it recovers
Hi folks hope I'm on the right forum , I was diagnosed with fibro some 10:years ago, I have just been through hell and back with extreme Fatigue blurry eyes , dry mouth My gp had bloods done and thinks it
Polycythaemia
as my red BC count was high he thinks I might need to give blood in the hope it recovers
Drew2u
in
Hughes Syndrome APS Forum
8 years ago
Polycythaemia?
I'm a 19 year old male tested for
Polycythaemia
. I had 2 blood tests undertaken previously prior to my referral and both times haemoglobin and red blood count was high. Referred to Queen Elizabeth Hospital and had more blood tests done in addition to a oxygen saturation check which was 96%.
I'm a 19 year old male tested for
Polycythaemia
. I had 2 blood tests undertaken previously prior to my referral and both times haemoglobin and red blood count was high. Referred to Queen Elizabeth Hospital and had more blood tests done in addition to a oxygen saturation check which was 96%.
moneab0987
in
MPN Voice
8 years ago
Running the Great North Run for MPN Voice
I was told that I had secondary
Polycythaemia
about 3 years ago, then was discharged and told I had nothing wrong with me. I have given up smoking (2.5 years ago) lost over 2 stone in weight and have got a lot fitter, so was really frustrated to find HB and HCT had gone back up in Feb this year.
I was told that I had secondary
Polycythaemia
about 3 years ago, then was discharged and told I had nothing wrong with me. I have given up smoking (2.5 years ago) lost over 2 stone in weight and have got a lot fitter, so was really frustrated to find HB and HCT had gone back up in Feb this year.
Chrissie2885
in
MPN Voice
8 years ago
G.P today to request testing for Hughes syndrome
Good morning 😊 I'm diagnosed with
polycythaemia
and fibro myalgia, but the more I read about Hughes the more I feel that this is what I have. I'm going to ask my doctor to test me. A new symptom has appeared and I wonder if it's also linked...I have had three nosebleeds in the past four days.
Good morning 😊 I'm diagnosed with
polycythaemia
and fibro myalgia, but the more I read about Hughes the more I feel that this is what I have. I'm going to ask my doctor to test me. A new symptom has appeared and I wonder if it's also linked...I have had three nosebleeds in the past four days.
daisy82
in
Hughes Syndrome APS Forum
8 years ago
Recently diagnosed
One week later the result of a blood test showed
polycythaemia
and 2 weeks later I had an appointment with a specialist at Blackpool Victoria hospital. I had no idea that there was any link to cancer until I was advised by the hospital to go to the Macmillan Unit.
One week later the result of a blood test showed
polycythaemia
and 2 weeks later I had an appointment with a specialist at Blackpool Victoria hospital. I had no idea that there was any link to cancer until I was advised by the hospital to go to the Macmillan Unit.
Fionnuaghla
in
MPN Voice
8 years ago
Polycythaemia
Just been diagnosed with this condition on a mild basis along with some other blood disorders. The hospital did not want to give any appointment as they told the doctor it was due to smoking. I have given up now. This week I have felt so tired and have no energy. Is this normal to feel like this. My
Just been diagnosed with this condition on a mild basis along with some other blood disorders. The hospital did not want to give any appointment as they told the doctor it was due to smoking. I have given up now. This week I have felt so tired and have no energy. Is this normal to feel like this. My
magmar
in
Lung Conditions Community Forum
8 years ago
NICE Final guidance: Myelofibrosis - ruxolitinib (review of TA289) [831]
Ruxolitinib (Jakavi) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults with primary myelofibrosis (also known as chronic idiopathic myelofibrosis), post
polycythaemia
vera myelofibrosis or post essential thrombocythaemia myelofibrosis only if
Ruxolitinib (Jakavi) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults with primary myelofibrosis (also known as chronic idiopathic myelofibrosis), post
polycythaemia
vera myelofibrosis or post essential thrombocythaemia myelofibrosis only if
Mazcd
MPNVoice
in
MPN Voice
8 years ago
MPN Voice March 2016 Fundraising Update
Kirstie is doing this in honour of her father Professor John McClatchey who had
Polycythaemia
Vera, he very sadly died last year of a heart attack.
Kirstie is doing this in honour of her father Professor John McClatchey who had
Polycythaemia
Vera, he very sadly died last year of a heart attack.
Mazcd
MPNVoice
in
MPN Voice
8 years ago
Hi
I am diagnosed with
polycythaemia
and fibromyalgia, but I will certainly be asking to be tested for Hughes Syndrome now. I have a couple of questions... Are severely heavy periods and muscle spasms (mainly the trapezium) common in sufferers?
I am diagnosed with
polycythaemia
and fibromyalgia, but I will certainly be asking to be tested for Hughes Syndrome now. I have a couple of questions... Are severely heavy periods and muscle spasms (mainly the trapezium) common in sufferers?
daisy82
in
Hughes Syndrome APS Forum
9 years ago
MPN Voice October Fundraising Update
Andrew’s partner David, was diagnosed with
Polycythaemia
Vera (PV) about three years ago after he experienced classic PV symptoms of horrendous itching and fatigue, and they both feel that raising awareness of our MPNs and the work that MPN Voice does is so important.
Andrew’s partner David, was diagnosed with
Polycythaemia
Vera (PV) about three years ago after he experienced classic PV symptoms of horrendous itching and fatigue, and they both feel that raising awareness of our MPNs and the work that MPN Voice does is so important.
MarilynMPNVoice
Fundraising
in
MPN Voice
9 years ago
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