Hi all, just going throught the process of being diagnosed with ET, Im 44, have high platelets, enlarged spleen and waiting on results forJak2.
I was diagosed after they thought I had broken my foot, turns out its a blood clot, not on any medication yet as was told my spleen is a concern. Had ultrasound on spleen yesterday and back to see consultant on 3rd July.
Have the itching, blurred vision, headaches, tired, aches, cold hands feet etc
I supose i am in denial as ive only known for a week, how did everyone else cope at first?
Thank you
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Katsy
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Hi Katsy, it's not a very easy time when you are first diagnosed as you will have so many questions, do have a look at our website where you will find lots of useful information about ET. You will gets lots of help and support from the people on this forum who are lovely, so just remember that you are not alone and that we are all here for you. Kind regards, Maz.
Hi Katsy, I have PV not ET but the symptoms are pretty similar so I know how you feel. I was diagnosed just last year and remember only too clearly how scarey it was not knowing much about my condition. This forum has been a godsend to me and you can also ask questions to the experts on the MPD website through Maz which is also a great comfort. I am sure some of the other ET sufferers will answer your questions and reassure you too. All the best, kind regards Aime
Hi. I am a 38 year old mum of an 8 and 11 year old. I was diagnosed with ET 18 months ago. I spent the first year struggling to cope with the diagnosis and had some counselling on the recommendation of my GP. I feel better now but still get quite emotional when I talk about how I feel!
When you have had all the tests and results make sure you get yourself a haematologist who knows all about MPDs as it can make a massive difference to your treatment.
Hi there, thanks for commenting, im a Mum too, have 3 teenagers, 1 in the Army, 1 off to Uni in Sept and the other starting final year of A levels, I work fulltime too and just put everything down to a busy life. Im sure once ive managed to get my head round this ill be back to my normal self, just a shock thats all
Hi Katsy. It is a bit of a shock at first. I must admit I had a certain feeling of relief that at last they had found out what was wrong with me (PV). I had gone so long feeling unwell with all the symptoms you mention and struggling to work every day feeling under par. I didn't get the diagnosis until I was retired and was almost elated that they had found the cause of my malaise and that I could be treated if not cured. Once they get your results and decide on your treatment I am sure you will feel much better. I am on hydroxycarbamide and do feel better most of the time. We do learn to live with it after the initial shock. This forum is great for us if we need empathy or just to get something off our chests. You do not feel alone so much and we can support each other. All the best.
Hi there, thank you. At least I now know im not imagining things not sure about treatment yet until I go back. I know ive got to have a BM biopsy at some point and im just grateful the NHS for once isnt on a go slow.
Im trying to figure out what to say to my husband and decided to wait until I go back on 3rd as I dont really know what to say.
Hi, it's 19 years since I was where you are now. I can still remember it though. I had a wonderful haematologist then (as I do now but a different one). Back then there was nothing on the internet so I was very much in the dark and had to rely on my haematologist for information. It's very different now, of course, and places as Maz says where you can get support from people going through the same as you. My advice would be to educate yourself as much as possible as you will come across people even in the medical profession who know little about ET. Go to good, recognised websites and don't be afraid to ask questions. You are far from alone and there is always someone out there to support you through this. Good luck
Thank you for taking the time to comment. Ive had a look as some site, some of the information is a bit conflicting, my haematologist told me ET isnt cancer and certainly isnt leukemia however some sites say it is so im rather confuddled at the moment
Hi Katsy, I also am a Mom to a 18 year and 13 year old, I recently turned 40 and have been diagnosed with ET for 5 years now... I to have enlarged spleen, high platelets, currently around 1200 (just stopped hydroxycarbamide & interferon) previously was peaking around 1800! I take Clopidogrel every day as aspirin didn't agree with my tummy (also have IBS) . I too struggle every single day, especially with the fatigue, headaches, itch !!, bone pain etc. I am currently seeing a councillor again and I have to say it really helps, I am reducing my anti depressants, which I have been on since diagnosis, and have recently started amitryptyline 10mg a night to see if this will help with the terrible bone pain. I empathise with your situation and am here for you .... Any time ... I know how lonely it can be and how difficult life in general can be with this condition ! I started treatment to reduce my levels in the hope it would make me feel better, but unfortunately for me I became very ill, I contracted the flu at the same time. I also wanted some major dental surgery, which could only happen if my levels were near normal ... I have knocked that on the head as I am not prepared to start the treatment again ( not for now) luckily I have the option as I have not had a previous clot or heart attack etc, so treatment for me is not currently essential . My advice to you when you have your bone marrow biopsy is to be sedated as this can be very uncomfortable otherwise, and also I mirror the advice that you should become your own expert, educate yourself as much as possible, get to know your own body, so you know if something is wrong or right! And finally, get the best MPD specialist you can find, these illnesses are so very rare, it is true a lot of medical professionals do not know enough about them, so search for an MPD specialist Heamotologist and you will be in the best of hands. Good luck to you and thoughts with you, Best Wishes Rinty xxx
Hi there, thanks for taking the time. I will take some time and seach for someone the specialises in MPD, its all a bit daunting and I am trying not to overload myself at the moment as there appears to be different schools of thought which has confused me
It terms of your diagnosis, tests should be able to confirm this. Screening for the JAK2 mutation is a first step along with the bone marrow biopsy.
However not all patients have the JAK2 mutation or the rarer EXON12 mutations, including me so that sometimes complicates an exact diagnosis.
In terms of the cancer question, the MPD's including Polycythemia, Myelofibrosis, and Essential Thrombycemia are all classified as types of blood cancers by the World Health Organisation and it is recognised as such in the UK.
On this basis you should obtain a Medical Exemption Certificate from your GP as this entitles you to free prescriptions. Also if you have any Critical Illness policies these should pay out also under the Cancer definition.
Some hospitals offer free parking for cancer patients so worth checking that out.
You may be able to claim Disability Living Allowance (set to become Personal Independence Payments) depending on the severity of your symptoms.
If your working it may be useful to tell your employer as they have a legal responsibility to make reasonable adjustments to your role and workplace under the 2010 Equality Act.
It would be useful if you requested a Buddy from Maz as you'll have lots of questions and Doctors don't always have the experience of these rare conditions.
Become your own expert by using sites such as this, I can also recommend:
Spotlight on MPN's
Haematologica (Quite technical so not for the feint hearted).
If you tell Maz where you live she maybe able to recommend an experienced Consultant in your area.
The good news is now you've been diagnosed you can be treated and that in itself can make a big difference.
Hi Ian, thanks for the tips etc, good to know im not on my own
Hi Ian may I just say how concise your post is. It has taken me since my diagnosis in 2011 to find out in dribs and drabs everything you have just summarised for Katy in one post. This site is wonderful for emotional support but just as important, a great resource for practical information.
Hi Katy there is always someone on here who will be there for you. x
Hi Katsy, ilc72's reply is one I would have liked to have received a few years ago. I am 44 have ET. (since I was 30) and it took me around 10years to come to terms with the condition and how it affected me. I was in total denial for a long time.my wife has and continues to be vey understanding and supportive, yet the rest of my family really do not understand. From your earlier reply above I got the impression you do not know what to tell your husband, my advise is to be brutally honest and share all information and web sites with him, you will need all the help you can get especially when the fatigue strikes.Good luck and remember there is no such thing as a stupid question, if you need an answer then ask.
Hi Katsy, I was diagnosed Aug last year at the age of 46 it took me a while to understand and come to terms with. All the information you have already received in answer to your post is brilliant and I cannot add anything better but wish you luck in coming to terms with everything and with telling your family and friends. This site is an amazing source of information and support and I am pleased you have found it so soon in your journey. Take care Diana x
I too have ET Jak 2 neg ,i am lucky because as yet I do not have many symptoms, get painful fingers and fatigue occasionally, more symptoms from medication than ET. This is the first time I have posted, just wanted to say that I would have welcomed the very good advice you have been given as it as taken me some years to get my head around and find the info you have been provided with. It really does help to know others are in the same situation as it can feel a very lonely place to be at times. Good advice re: employers, just about to discuss this with mine.
Although I have not posted before the info I have found on this site has been most helpful
Thanks x
Oh Does anyone know of a good specialist, i live in UK East Midlands.
Hi Katsy, pleased to hear you are feeling a bit better about things. The support of this forum has been a godsend to me and I am so grateful for it. I found it difficult to tell my husband too and he was sort of in denial for a start of the condition I had, putting the fatigue down to depression because my mum and dad were ill (I lost them both last year but they were 88 and 92 so lucky to have them as long). It has been a bit of a struggle to get him to understand exactly what I am going through with my PV but he is much more supportive now and I encourage him to go on to MPD Voice website for information and to come to haem appointments with me, so he hears the information from the horse's mouth! Take care, Aime
Hi, I am 61 years old, and I was diagnosed with ET about 3 years ago, just had aspirin at first. I am JAK 2 negative, which the haemotologist said was better than positive!! I had a bone marrow biopsy, they gave me gas and air while I had it, it was uncomfortable but not dreadfully painful - as I expected it to be!. I got a cup of tea and a biscuit after too. (always welcome) I have been on hydroxycarbamide for about 8 or 9 months. This has taken my platelet levels right down. It takes a bit of getting used to, and I was terrified when I first took it, but reading the experience of others on this forum made it not so scary! I now see a specialist nurse instead of the consultant each time I go for a check up. I currently take 1000mg hydroxy monday to friday and 1500mm saturday and sunday. I do feel tired and I get night sweats, but otherwise ok. Try not to worry too much, you could have something a lot worse!!
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not sure about treatment yet until I go back. I know ive got to have a BM biopsy at some point and im just grateful the NHS for once isnt on a go slow. 
Happy New year and my best wishes to all of you!
Happy new year to you all !! Love from twinkly !!! 
Hi all I'm new here
