Hi i'm 51yrs old Newly diagnosed with JAK 2 positive myeloproliferative Had a Tia in September 2013 With a platelet count if 850

[Phelpsy]

I would like to find out more about this disorder ,

As its totally alien to me

any advice

Or info would be much appreciated

[sksar]

Hi Phelpsy,

Welcome. You have already found the best place to find about MPN`s. Keep up with this site and you will find over time all the information your require will be here. I can`t help you with your question but someone here will be able to. Good Luck!

[Phelpsy in reply to sksar]

Thank you for your reply, im slowly gathering more info on my condition ,hope to spend abit more time with you people , as this still freaks me out ,,i find it difficult to talk about it to family,im hoping i can overcome that with you guys ,x

[Phelpsy in reply to sksar]

Hi Sksar

Thanks for your message I'm very greatful for your reply ,

Hope your keeping well ,

[Aime]

Hi Phelpsy, Also a big welcome to this forum. If you go onto the MPD website that will give you loads of information and also if you have questions specific to your illness, you can email Maz who will get answers for you if you can't get them from other members of this forum.

I know joining this forum was the best thing I ever did. I am 56, female with Polycythemia vera (PV) but Jak 2 negative. We are all different but have similarities too if that makes sense! There is a lot of support here from fellow sufferers who really understand what you are going through. Kindest regards Aime

[Phelpsy in reply to Aime]

Thanks Aime for your reply I hope your keeping well , everyone on MPD have been so helpful ,including yourself ,I still find it really hard to talk to my family & friends as they think I'm going on about it ,but it's so difficult for them to understand ,

I hope one day I can talk openly about it ,

Thanks again ,

[Aime in reply to Phelpsy]

Hi Phelpsy, I too found it very difficult to talk to my husband, my kids were easier to talk to. When I was getting the important results, I did ask him to come with me so he could hear exactly what was happening and what could happen. I think we don't want to worry our nearest and dearest but we do need support within our homes as well as from the forum. I would want to know if my hubby had PV or similar so I try to put myself in his shoes. Aime xx

[noodles26]

Welcome! This website and MPD Voice are like my bible at the minute!I must know every page off by heart! I am 26 and have struggled coming to term with having PV but through the help of this forum I am getting there everyone is so helpful on here! Maz is a godsend and will help you with anything! You are in good hands here Phelpsy x

[TrickyDicky]

Hi. I was diagnosed with ET JAK2 positive in 2008. My platelet counts have been fluctuating between about 700 and 900 for the last year though recently just topped 1000. Up until now been fortunate enough to be just on aspirin and seem to have managed ok without too many symptoms so far… touch wood. The more you find out about the condition it helps in coming to terms. It certainly took me some time but MPD Voice was the main reason in helping me to do that. I would strongly recommend the forums if you can get to them. I hope you don't have too many adverse affects from your TIA.

[Phelpsy in reply to TrickyDicky]

Awww thanks for your reply sorry it's taken me so long , I forgot How to get on to this forum , my memory's a bit sluggish ,im taking Hydroxycarbamide & clopadogrel & simfastatin .

Have got a small memory problem due to my Tia

But hey Ho I'm one of the lucky ones , I'm slowly getting there , everyone had been so helpful in here ,including you ,thank you ,

Hope your keeping well ,

[Hidden]

Hi,

I was diagnosed with ET JAK2 positive with platelets about 925 after a couple of TIA's as well when I was 52. Due to TIA's and a couple of other things I was classed as 'high risk' and put on Hydroxy but everyone is different. A lot of people in the health profession don't seem to know much so I read up as much as possible so that I could ask relevant/pertinent questions on my visits. Good luck

[Phelpsy in reply to Hidden]

Hi yorkie1, thank you so much for your reply ,sorry it took me so long to reply im not to good on computer ,We seam like we have lots in common ,i hope you recovered well from your TIAs , yes im also classed as a high risk ,im also on Hydroxy, 500mg 6 days a week then 1000mg on a Friday , clopidogrel 75mg per day , & Simvastatin 40mg per day , ( i get very tired at times) i gather this is part of the disorder ??? my platelets have been as high as 950 but now there 500, still not ideal but not dangerous I have recently had a MRI due to memory problems, and they found i have small aneurysm's could be my meds causing this ,i'm a wee bit stressed due to all this, i visit my haematology every 4 / 6 wks, take care ,, hope to hear from you soon . Pam,

[Hidden in reply to Phelpsy]

Hi Phelpsy, no problem re getting back to me. I'm on 2x500 Hydroxy Mon to Fri and 3x500 Sat and Sun and the same as you re Clopidogrel and Simvastatin. Platelets at 350, your will be around 400 in no time.

Fatigued yes but more debilitating I find in my case the dizziness, unsteady on my fight and basically feeling out of it plus headaches. They found damage in my head on MRI as well and have put it down to Cerebral Vascular Disease. Another MRI recently as memory getting worse, saying wrong words and getting confused, said it's still the same. My heart has gone into Atrial Fibrillation last week so now waiting for them to give electric shock treatment to knock it back into sinus rhythm, they think it was our arch enemy a clot.

While I wait I have gone on Warfarin to thin the blood but they were confused as to why it isn't thinning as quick as usual until I asked if it could be my ET producing the stickiness etc. sometimes you have to wonder who the doctor is.

Hope everything continues ok

Gerard

[Phelpsy in reply to Hidden]

Hi Yorkie,,,, goodness we are like clones ,lol ,we do have a lot in common ,i also get very dizzy & lots of flushes ,my memory is terrible ( my short term) ive got some Possible mild vascular cognitive Impairment ,due to my tia i had in September , i do hope you get sorted out real soon ,its scary at time's, i'm a worrier get so stressed out. i really do wish you all the luck in the world you get that ticker ticking along nicely again , good job your on the ball regarding the Warfarin,

[teecee]

Hi, I was diagnosed with Pv 9 years ago aged 31 and managed well on aspirin until couple months ago when a bone marrow biopsy showed it had progressed into mf. Am now on interferon and coping ok. Its good to know of others going through the same things that can understand how we feel.

[Mazcd Partner MPNVoice]

Hello Phelpsy, welcome to the forum, you have been given some very good advice in the responses below, I would strongly urge you to read as much as you can on our website, and if you have any questions please ask, we do our best to answer them, you can email me at [e-mail], I don't know if you have registered with us, sorry the user names on here don't give me any clues to names/email addresses so I don't know if you have already registered with me to receive news and updates etc, if you haven't then please email me and I can add you to the list. Kind regards, Maz.