I was told I had ET in April 2013 after a bmb and there had been a mistake and my results were given to the other patient and mine to them.

[avondale2009]

My question is on the accuracy of a bmb in diagnosing an mpn. I don't know if I am questioning this because of the mistake with the mislabelling after being told they were certain I had an ET as both mine and the other patients results were showing the same results or it is because I suffer with other illnesses that affect blood results. I have Rheumatoid arthritis, cervical spondylosis, bronchiectasis and asthma. I don't know if this is a form of denial on my part but its been on my mind for over a year, I just haven't had the nerve to put it to anyone. I suffer with all the symptoms everyone describes but as I have quite bad arthritis I don't know what is causing what. I have been on this site nearly every day since I found out about my ET but have only just found the courage to ask my question. I don't see my haem very often and don't feel I can ask questions. I don't talk to my family or friends about my mpn and as many of you have said because I look ok people think you feel ok when really everything you do is an effort. My platelets are steady and stay between 580 to 730 and I am on 1 aspirin a day, I am 45 but feel 75 most days.

[Mazcd Partner MPNVoice]

Hi Avondale, I can completely understand how you feel, as will others on this site, about being able to talk to people about your MPN, it's very difficult to come to terms with the diagnosis of any of the MPNs, especially as not much is known about them, they are not common conditions and people just don't understand what you are telling them, and your comment about looking ok but feeling that everything you do is an effort is one that we hear a lot at the patient forums, in emails on and this site and it's very hard to convince some people that you don't always feel very well. You have said that you don't talk about your ET to your family and friends, maybe having a buddy would help you, a buddy is someone who has the same MPN as you and takes the same medication so can help and support you from the perspective of someone who really understands what it is like to have ET, if you would like to be put in touch with a buddy please email me at [e-mail] and I can send you a form. I would also suggest that next time you are due to see your haematologist that you write down the questions that you want to ask and tell your haematologist that you have a list of questions that you would like to have answers to to help you understand more about your ET, it's always best to write them down so you don't forget something important. We have information leaflets available on ET which has hints and tips on how to tell people about your ET and also advice on talking to your haematologist, I can post you a copy if you email your address to me at [e-mail]. Kind regards, Maz.

[avondale2009]

Hi Maz Thank you for your reply. I only have the one question regarding the accuracy of the BMB with the other illnesses I suffer with, I am a bit apprehensive of asking that question as I don't want it to look like I am undermining his experience. I would like a copy of the leaflets if its no trouble and am thinking about the Buddy idea as I don't talk to anyone else about how I feel about having ET. I try to plod on as we do but its not just the physical side we deal with its also emotional. I will email you with regard to the leaflets.

Kind Regards & Much Thanks Andrea.

[Phelpsy in reply to avondale2009]

Hi Avindale2009

I am looking for a buddy reading your post we have lots in common , I'm having lots if tests ATM & would appreciate your friendship ,

I also don't talk to much about it to family , hope you don't mind me asking , but I'm in need of a buddy 2, thought we could swap notes, kind of .

Hope to here from you soon .

[avondale2009 in reply to Phelpsy]

Hi Phelpsy

It would be a pleasure to be your buddy you can email me anytime. What kind of tests are you having, It makes understanding how the ET is affecting you when you suffer with other things going on. I do think with me a lot of my symptoms come from my cervical spondylosis but the brain freeze has got worse lately and I think that's from the ET after reading what other people say. My email is [e-mail].

Kind Regards

Andrea

[chrissie1959 in reply to Phelpsy]

Hi I to have et always happy to talk chrissie1959

[avondale2009 in reply to chrissie1959]

Hi Chrissie

I think all of us are happy to talk to each other and its so nice that people can do that on here.

Kind Regards

Andrea

[chrissie1959 in reply to avondale2009]

Hi avondale2009 , I felt alone until found this site all happy to help I've had et for nearly 7 years have,asked friends on here few things I didn't no , also last year found out that we are intitled to free prescriptions too x so lots of information x got my form from my consultant x . Take care Chrissie 1959

[Phelpsy in reply to chrissie1959]

Hi Chrissie

Sorry I took so long to reply ,

I would be very greatful for your friendship as I'm sure we will have lots in common ,we can swap notes & give each other support , I'd like that ,

Pam x

[chrissie1959 in reply to Phelpsy]

That's ok x would be lovely Pam x I would love to stay in contact too x

[Phelpsy in reply to chrissie1959]

Thanks so much , means a lot to have a friend to talk to , it's so important we talk about our ups & down's hopefully more ups

I'm in North of England , where you if you don't mind me asking x

I do hope your well & keeping on top of things , x

Look forward to hearing from you soon x

[chrissie1959 in reply to Phelpsy]

Hi x I had et for nearly 7years now x I live near spalding in lincolnshire x I'm quietly well at the moment going back to consultant on Dec 18th hopefully platelets gone down a bit as starting to increase again x how you coping with your et. Always on here to chat as not working due to health x x

[Phelpsy in reply to chrissie1959]

Hi Chrissie

Ooo you've had it snow time them probably a wiz on ET no seriously I'm glad to hear your well at the minute that's all we ask to stay fit & well ,

i was diagnosed sep 2013

I was get & well then bang had a Tia ( shock to us all )

And after a few weeks testing bloods & scans found I had A platelet count of over 900+

The corse of the Tia , but it's down to 500 now , it's going down steady , thanks to my meds

My next app is 5th Nov so hoping for lower count

Bye for now Pam x

[chrissie1959 in reply to Phelpsy]

Hi x bet that was a bit of shock x I found out after my 2nd stroke x so happy to take meds was already on aspirin and then went on hydra been taking that for 6 years now x on lots other meds for heart to x 4got to say I'm 52 53 in Dec x so about same age a had a peak at profile x hope you didn't mind x I married 3 kids 2 left home got 3 grandkids too x r u married and kids xxx

[Phelpsy in reply to chrissie1959]

Awwww that's not nice 2 ,strokes & heart problem bloody hell ( Ooops ) I'm so glad your over that , forgive me , you never get over it ever x

Yes I'm married , been married 29 years , we have 2 girls ,24 & 27

But no G/ kids :(((

I have mild cognitive problem & found I have a couple cognitive vascular impairment !!!

But still ticking , lol

They keep looking & finding more stuff lol u just close my eyes & ears & think nice thought

Ok dear must dash my Brother & wife are on there way ,

Take care

Pam x

[chrissie1959 in reply to Phelpsy]

Hi Pam just read that you not been well x hope you are feeling better soon and headache goes x take care Chrissie xxxx

[Phelpsy in reply to chrissie1959]

Hi Chrissie it was lovely to see your message this morning thank you ,

I have a DR Appointment thus morning so hope to get something to ease the Pain , I will post later to let you know how I got on ,

Pam x

[chrissie1959 in reply to Phelpsy]

Okies you take care x chat soon xxx

[chrissie1959 in reply to Phelpsy]

Hi Pam x hope all ok and you are feeling bit better x take care Chrissie x

[Phelpsy in reply to chrissie1959]

Awwww you made my day x thanx

I'm feeling much better now thanks , hope your well also , I'm so busy I'm having a coffee morn for MPN on 22 nov , so making card & prep work ,but it's all worth it this forum has been so helpfull & also my friends like yourself have played a massive part in helping me come to terms with my disorder

Thanx again Chrissie ,wish you could attend x where abouts are you in the country ,I'm Neecastle x

[chrissie1959 in reply to Phelpsy]

Hi Pam x hope 22 goes well for you sorry I don't drive I live near spalding lines x glad your feeling loads better x I ok go consultant Dec 16 got changed appointment this am x take care x

[Phelpsy in reply to Phelpsy]

Hi Avindale

Sorry I've taken so long to get back to you ,I forgot how to get onto this site ( I'm not the best at this )

But have a new iPhone & it's much easier for me ,

I would be very greatful if you wonks be my buddy

As I need help at times coming to terms with My ET & see you were looking for a buddy , I would like to go to a MPN meeting but they all seem so far away , I'm in Wallsend ( Newcastle )

Look forward to your Reply ,

Hope your keeping well x

[Sherry2]

Hi Avondale

I also suffer from ET snd am on medication.

Don't be scared to ask question, you are trying to fully understand the situation.

As Maz suggested, do your homework and write down your questions. I usually prepare my questions and also write down the answers in front of the heam, so I can think it through later.

Please remember, you are not alone. We are here.

All the best

Sherry

[avondale2009]

Hi Sherry

Thank you for the advice I will do as you and Maz have said. I feel awkward asking my haem questions as you feel like they haven't got the time. I haven't seen anyone for nearly 6 Months now and I didn't see Haem at my last visit I saw a nurse. I do loads of research and spend hours watching the videos etc. I just don't talk to anyone about it.

Thanks for the support and the same goes.

Kind Regards

Andrea

[bernie62]

hi maz i also find it hard to ask my Heamo, questions, as she seems to be so busy, and leave, a bit up set, and frustrated, about the info i receive, In two and a half years i have had mf, i .still havent met anybody, or spoke, to anyone with mf.

could you please tell me, if there is a forum in Manchester, this weekend, and if so, where and at what time.and i think i would like to meet a buddy, or buddys, with mf. thank you..

bernie62.

please note, my new email [e-mail].