New scans and results

[Inca]

Hi Maz,

Hi all other MPN people on this site.I have just had 'Doppler'scans,as my G P was concerned that in spite of increased Hydrea,hematocrite was not coming down below 50.Result was 'furring up 'of arteries.Assured that it is P V that is cause,not life style,been slim ,fit,none smoker or drinker......Then a following blood test showed 'presence of aglutinin froid' (cold).....googled it to understand.My question ,Has any one else had these two problems? I would like to find some info before my appt with consultant 5th Feb,Hematocrite has suddenly dropped to 43 last week 's blood test.Would be so pleased to have some feed back from any of you,as I am really quite scared again now of whatever next. Hope all have as healthy as possible 20 15.Forgot to say Iam P V 4yrs.

[Mazcd Partner MPNVoice]

Hi Inca, what a nuisance this is for you, I can understand that you are feeling scared, it seems with these MPNs of ours that there is always something new for us to cope with, I don't know anything about the agglutinin I'm afraid other than the definition of it in the dictionary and information on the internet, sorry I can't be more helpful. Best wishes, Maz x x

[Inca in reply to Mazcd]

Maz,this is third attempt and each time my mail disappears into the ether.So I will just say Thankyou,and that I will let you know out come of appt with consultant.I just wonder how many of us are un diagnosed with similar things,I do not feel any worse than usual,abit better in fact since Hematocrite came down and H H reduced.Best Wishes,Thankyou for being there .xxx

[Nickthedevil in reply to Inca]

Hi Inca, I would be really interested to know the outcome of your appointment. I was diagnosed with ET 2.5 years ago. I was diagnosed with Cardiac syndrome X/Microvascular angina 9 years ago but tests showed very little furring up of the arteries. However 3 months ago I suddenly developed unstable angina and experienced chest pain which felt like a heart attack each time it happened. I was admitted to hospital as an emergency case and following an angiogram two stents were inserted into my right coronary artery due to major furring up. They also said that there is some furring up in the left coronary artery. they were surprised that this had happened so quickly as I too have a healthy lifestyle. I do have some family history of heart disease, so it could be down to that but I am wondering if it could be to do with the High platelet count caused by ET. I realise that this is different to your raised blood counts but different MPN's seem to be connected in so many ways. Did your consultant confirm any connection?

Hope you are feeling better, Karen

[Inca]

Hi Karen,neither consultant seemed worried about arterys being a bit furred,do not need another Doppler for two years!I have a stent,fitted after my P V diagnosis when an artery collapsed when blood thinned with Hydrea ,aspirin,etc.My hct is rather high at the moment,47, so on 3 2 2 Hy to get it down.Blood tested every month,so hoping it will be down next test.Family history of heart disease my fathers side,yes I think my heart and blood medics do think thre is a connection. Iam treated in France,diagnosed here.Platelets are normal,my big problem is hematocrit......all is a worry isn't it...my excellent Dr (GP) has prescribed anti depressants to help me stop worrying,seems to help.Always seems to be one thing after another with our M P N s,not enough knowledge of how dreadful we feel some times ,and the chronic fatigue that stops us from doing normal work .Best of luck to you,keep as well as poss,unfair that we fit slim people get this awful maladie,kindest regards,keep strong.