My story

I was diagnosed with E.T. last November (2011) & was told by my Haematologist that it would be a "walk in the park". That I could go into his waiting room & ask anyone with E.T. if they had any problems & the answer would be NO. My Doctor also told me "people with your condition don't have problems"................ This makes me so upset as my life has been turned upside down, and I am in such pain, although had no pain or symptoms before med's. Please tell me something nice to sooth my nerves. I know I'm not going mad, but the above comments make me feel like it when I'm not coping well.

70 Replies

  • Hi StreetPastor - your experience with the haematologist is not uncommon and it's not helpful. This is a fairly rare condition and people have different personal experiences, some good and some not so good as I've learned through my own ET journey. I was diagnosed with ET about 4 years ago and fortunately have had good medical care but through my involvement with MPD Voice and the patient forums I can see that some people are not listened to as they come to terms with what can be quite debilitating side effects of meds and the emotional roller coaster of how having a long term chronic condition can affect us all. I would recommend speaking with a buddy as offered by MPD Voice and getting to know as much about the condition as you can so that you are well informed for your next medical consult

    Don't despair, I'm sure you will get to a place where you feel you are living with the condition and it is not the only thing that identifies you.

    The other thing to encourage you is that there is a lot of research going on and I am sure that there will medical break throughs for new alternative medication

  • Thanks Florence Xx

  • I am 37 and was diagnosed in Jan 2012 with ET. My consultant told me I could lead a normal life but as people my age don't usually get it he couldn't tell me what my prognosis would be. He then went on to tell me that if I was between 50 and 70 the average life expectancy is 15 years!! I have 2 young kids and I was gutted when I got the news.

    I am still trying to get my head around the whole thing. I am on aspirin at the moment but last week my platelet levels had jumped up to 810 and my consultant has started to talk about other meds. I am not in pain but I get aching legs and tired really easily.

    Like you, my life feels like it has been turned upside down. I have good days and not so good. I get frustrated that I although on the outside I look fine, sometimes I feel like an 80 year old on in the inside!!

    I think it is still too recent for us both to come to terms with the fact that we are living with a life long chronic condition. I read somewhere that it can take around a year for this to happen.

    I am sorry I can't write anything nice as such but I hope hearing my story makes you realise you are normal and not alone.

  • Thanks for that Ruby, I'm not sure he is correct about the 15 years life span thing. Another question to throw out there maybe?

    I have had email contact with someone who has had ET for 29 years. He was told all those years ago that with treatment he could expect to live 8 - 11 years. Needless to say he's still going & was also 37 years old when diagnosed with two small children. This means you should be paying into your pension fund! Xx Big Hugs Xx

  • I was diagnosed with ET in 2008 and don't really have any symptoms, I was 29 when diagnosed. I did suffer two miscarriages which were put down to having ET and this is what triggered blood tests etc. My consultant says as I am young there isn't a lot of data out there to predict my long term future, she said I may start to have problems in about 20years, I have a 2 year old so this has devastated me although I am coping with the news a bit better after having some counselling. I feel physically fine and get frustrated more than anything that I have this silent disease hanging over me. I have good days and bad days but I am determined not to let my diagnosis rule my life. It's so nice to finally communicate with other people in similar situations as I have felt so isolated since my diagnosis, all drs keep telling me is how rare the disease is especially in people my age.

  • I wonder how rare is rare? I've found a friend who lives down the road with ET. She was diagnosed at 30 and has had it for 6 years. I wonder is the frustration and dark cloud (that we all have at least at the start) because of the lack of knowledge and feeling isolated. Well done MPD Voice staff, you are all amazing for the work you do!

  • Hi streetPastor. I have been living with Myelofibrosis last 6 yrs and found that I wasnt given enough info at diagnosis and there was nothing like this forum to share experiences with peops and get some reassurance that you're not the only one with it. . The key is to do your own research via the Net and find out as much as you can - if you want to of course because some may not make easy reading. Use reputable sites like mpd voice. It has helped me to read and listen via youtube specialists and patients talk about my condition. The Mayo clinic in the US is an example but I dont know if they do same for ET. i think you wont go too far wrong with this site tho as it develops. Cheerz and keep your chin up .

  • Thanks Jed, Myelofibrosis and acute leukaemia are the two things I have not read about, but hang over me as theres words were waved over my head at diagnosis. I like to know things as its the fear of the unknown that bothers me most.

    How are you doing Jed?

  • Well StreetP thanks for askin.. Id love to say Im a hundred percent on top of things but I have some day to day probs as most do. It helps that after these past years ive come to terms with things and the prognosis, and though ive never spoken with anyone with PMF i see there are some folk in this growing community with it at various stages.

    The MPNs are not dissimilar in their symptoms and apart from the fatigue, sore legs and feet affect me along with a enlarged spleen which can be sore and puts me at the top of the guinea pig order at my GPs when the students are there. I wouldnt worry yourself about MF or AML at this point because you will be very unlucky if you are affected by either. Cheerz JediR

  • Wish I could encourage you also Jed, but thanks for your chilled attitude and good advice :-)

  • You dont need to because its you as newly diagnosed that needs our support. I recall how bloody hard it was to accept my life would be different especially as I had to wind up my painting and decorating business and had little or no income for a time which didnt help. Its why if I can help anybody newly diagnosed or not in some small way by passing on a snippet of knowledge or the whole sweaty t-shirt I'll do so. for now just tune to Mrs Browns Boys on BBC1 and have a bloody gud laff

  • Your a star Jed

  • Hi You are first person with MF that I have come across are you in the UK. I am in Dorset aged 73 & was diagnosed a year ago My doctor tells me the only thing they can do is keep me comfortable which means weekly blood transfusion

    wendy helen

  • Hi WendyH I wasnt sure if you meant me or Marketa but youre not alone out there. Are you on any meds along with your tranfusions. , . As you probably know MF generally affects people over 65 and the stats are 1ish in 100,000 so youre unlikely to bump into anybody with it. At my hospital theyve had 7 cases in ten years including me. It sounds like you might have had it a while without knowing. Hope youre copin with it ok and are generally well.

  • Hi no I am on no medication except my doctor got me on the latest trial drug which was wonderful right from the first dose (couldnt believe it) even the arthritis pain went but now the drug is affecting the neutrphils theyre down to 0.4 so I had to stop the drug last week now everything has come back just as quickly as it had improved, I was warned about this as its not a cure but just help the symptoms & it sure did that though now Im back to reality.

    I am really lucky to have the leading expert in the UK Dr Killick at Bournemouth Hospial She told me that due to my age & intolerance to most drugs it isnt worth trying anything as it wouldnt cure the problem & the side effects are worse to cope with.

    I looked up the stats on MF & found it to be one in 1million600thousand so as you say there is no one to refer to especially in this age group. By the way has anybody any theories about how they contraced their problems, I am convinced mine came from taking Bendroflurizide for about 30 years

  • Hello Wendyhelen and Jedreject, it was found that I had polycythaemia in 1983 when I was 37, this has now become MF in the last 3 years. I am JAK2 positive. I regard myself as well and my blood has been ably controlled by varying doses of Hydroxycarbimide over all these years. I am now beginning to be aware of ankles and feet being painful, especially first thing in the morning, and often need a doze in the early afternoon. Due to the Hydroxy I am verging on anaemia all the time but I only seem to be affected by this when walking up hills. I am lucky by having a positive attitude to life and trying to make the most of things. I am sure that helps me mentally and physically. Keep positive and enjoy life; as mnuch as you can and for as long as you can.

  • Hello everyone. Our son was diagnosed with Primary Myelofibrosis five years ago after a routine blood test showed abnormal readings.Initially he was told a Bone marrow transplant may be needed within two years.He has now totally relooked at his lifestyle, still enjoying himself but firstly looking at his dietary needs. Plenty of fresh food, very little redmeat and a minimum of 2 litres water a day. He has a brilliant haematologist but also has professional help in that he take extra vitamins daily. He keeps himself very active . So far his blood picture has improved since his diagnosis and he is really well. ,

  • Thats fantastic news!

  • Yes this site is amazing so pleased I found it. I do think that cloud of doom is because of the unknown. I have heard its becoming more common especially in younger people, although i don't know anyone with any of the conditions. my consultant tells me what might happen but then says that she is confident there will be a cure within the next 20 years and it's a good thing that I am jak2 positive as they know this is what causes it. That snippet of hope keeps me positive about my future, I'm determined to see my son get a job, marry and have his own children.

  • I'm sure you will as well! I wonder if there is any difference in symptoms between Jak2 negative and Jak2 positive................I'm a negative one ;-)

  • Hi I am also jak 2 positive so I did not need a bomb which was good I have ET about 18 months now I take hydroxy and baby aspirin 1 hydroxy one day and 2 the next day and so on could you tell me what jak2 positive means cheers millions

  • Not sure but I bet someone will answer your question soon............

  • I have had ET since 1986 and treated with Hu and aspirin since. from 2000 or so i have to have about 4 to 6 venesections a year. I did find it difficult in the last 12 years to work a full 8 hours and managed to retire at 55 . I am now 68 years old and am keeping well and am now the Town Crier and the engineer for our Britain in bloom group.

    however i might well be lucky to get away if not a walk in the park certainly a gentle stroll.

    I am not sure that everyone is fortunate as me and particularly doubt how comfortable people are on angrelide it seems to give people a lot of heartache literally.

    I am reasonably sure that given a good haematologist and watching the condition carefully that you should be able to make a reasonable old age . I achieved my target of getting my two girls through to adulthood with their old dad still there.

    all the best

    Chris oyez oyez

  • Thanks so much for that Chris, Yes I'm on Anagrelide as Hydroxy nearly finished me off. I had huge (rare) reactions and it was impossible for me to continue on that path. My Haematologist didn't believe me and it took a second opinion to get him to take notice of me. My platelets were 1845 when diagnosed and I'm 45. He has me on 150mg aspirin a day which I understand is way too much from others? Platelets were 753 on 2.5.12, since then I have increased my Anagrelide in-take.

    Was very interested to read comments on stress & how this may effect us. I think it plays a big part in how my body responds.....................

    Also is there a reason why you have venesections? It sounds a much more organic way to handle things!

  • Hi, I was diagnosed PMF a year ago, I was 36 and of course it was a shock. I think a lot of problems are in our brains, first few days (maybe weeks) I felt horribly and I had all symptoms (tiredness, pain,itching, burning...), but then I completely changed my lifestyle, now I dance three times a day, I spend a lot of time reading jokes and I am very happy again. My platelets are 810 now, but I am still refusing Anagrelid theraphy and have only Aspirin (nearly without side effects). I think it is very important to know as much as posssible, fortunatelly there is internet we can find information. And you are responsible for your health, not your doctor. :-)

  • Yes I am learning lots, and trying to sort out which is correct information, as there seems to be a lot of rubbish out there also.......I want to be responsible for my health, but my Haematologist appears to be "old school". Do as I say kind of thing......In fact he has scared and bullied me into taking my med's. The worm is gaining info and may turn (in a polite way of course).

  • Hi Streetpaster I have had the same experience as you and was also diagnosed in November 11. I have PV and the doctors at the hospital all say I should have a normal life as they are now managing the condition through Hydroxycarbamide, having blood taken regularly, asprin sinvastatin and strong pain killers I also have to take Diazapan for the restless legs and pain I get from the constant fatigue. Unfortunately I had a number of minor storks before diagnosis and problems with involuntary limb moment so I also get the haematologist saying it is a neurological problem and the neurologists saying it is a haematology problem which is not helpful. this forum has been so helpful to me to make me realise that I am not going mad and that I have to start to live with the condition by changing the way I live, which is what I am working on with the help of family and friends.

    Take care and thanks to all who are sharing their experience which helps so much

  • Geordie, your beautiful & an absolute star! Diazepam are quite literally a God send at times, although I'm confident things will settle down. I have 12 - 18 good days a month, which I'm sure will increase when I've found the right med's, Haematologist & new life style. I have recently sorted out work, moving from a very stressful school doing 26 hours a week to a calm school 15 hours a month. I shall then increase my hours as time moves on. I'm sure stress plays a big part in how good or bad I feel. Not that I imagine the symptoms, but when anxious and stressed my muscles tighten, heart rate goes up even more and thus has a knock on effect. Also think my period effects everything (sorry guys)..............

  • Hi, StreetPastor, I was diagnosed with ET a year ago and am now on Hydroxycarbamide and asprin daily. Yes, I do get tired but the MPD Forum last Nov in London made me aware of the benefits of exercise in coping with that. I have some pain but am beginning to recognise it's important for me to reduce avoidable stress. I have been quite shocked by both my GP and two haemotologists at the local hospital - their lack of knowledge about the illness - but have found re-assurance through MPDVoice. I have also begun to be more pro-active in my treatment plan, again thanks to MPDVoice and a young locum haemotologist who obviously knew more about ET than my previous ones. At first, I couldn't believe I had a 'rare chronic blood disorder' but a year later, I think there are worse things to have: knowledge about the illness and its treatment is constantly expanding and there are other people in the same boat to swap experiences with. So, take heart. I found the forum I went to really useful - try to get to one.

  • I'm aiming for the Cardiff one, and yes I have noticed that stress plays a big part in my feeling well or not. MPD voice are a light in the darkness!! I am planning on including exercise as part of my new life, and I'm sure this will help greatly as well

  • Hi street pastor

    I was diagnosed with ET over 10 years ago when I was 23 as was very symptomatic with platelets over 1000 - when Over about 800 I get nosebleeds and migraines etc so I do need to be on treatment - was on hydroxicarbimide for 7 years but ended up with bad stomach problems so have been on interferon and now just started pegulated interferon - am having some side effects but been told these will wear off in time like they did with regular interferon! It is a battle sometimes but do want to say it will get better - my specialist really thinks our life expectancy Is as good as anyone's if condition treated and controlled - I know people who have had it and other mpns 20/25 years diagnosed later in life but said they probably had it undiagnosed a lot longer - have had many ups and downs but you can live a normal life but like others say on this list definitely good to avoid stress and take up excercise like yoga/meditation/swimming and tai chi all of which have helped me combat fatigue and relax - if you need any advice happy to help as know this will be a worrying time for you right now - also have details of mpn specialists all over the UK whe I know you can ask to contact and they are happy to provide other advice etc to you - this site has been brilliant for us sharing experiences and finding comfort and as it grows definitely makes you realise we are not alone and all the research being put in to cure this illness - it does look promising that there will be a cure in the future and always good to print off information from this site that you have learnt so you can challenge your hemotologist at appointments as you shouldn't be fobbed off and your concerns ignored at all - hope you are okay and things do start to get better soon for you

    Take care Becky

  • Thanks Becky, I will remember your offer of help Xx Amazing how a good day changes ones outlook. Feel great today, pain free almost. I am definately aiming for low stress, exercise and plenty of laughing to be done!

  • PS I'm very interested in pegulated interferon. I know it's 'new' but would love to know if Anagrelide is more dodgy due to its links with Myelofibrosis and acute leukaemia. Although I understand Interferon has links with other things?

  • Hi street pastor

    I have just started pegulated interferon i had my third dose on Saturday and just feel a bit tired and headachy which is a lot better than last week so looks like my body is gradually getting used. Have heard both from other people on the drug and my consultant that you can have successful pregnancies on this drug as well as your condition can go into molecular remission as wel as reverses and can halt progression of your mpn which results in medication breaks. I have never been on anagrelide so I can't really help with experiences there but I would ask your consultant that would be good to see all options medication wise and look at pros and cons. Pegulated interferon is not currently licensed for mpns but it can be prescribed if your consultant does a business case for you which takes about 5 weeks to approve. Am sure it will eventually be licensed as it is in America and Australia so more available. You could try the normal interferon which I was on before this and for the first time my counts got under the 400 mark and apart from a bit of brain fog and fatigue I felt fine - I think with all medication it took a couple of months to get used to it and had some flu like symptoms but once on right dose really helped! I haven't seen links with interferon progressing to other conditions but I do know some people do not tolerate it so well and can't be on it - everyone is different and not all side effects are the same which I think our consultants find it difficult to understand at times! Hope you are having a good day today and try and stay positive - I have my next appointment in 3 weeks so will let you know how it goes as know other people's experiences always help you when speaking to consultants but if you need to chat or anything else let me know take care Becky x

  • Yes please do keep me up-dated. I'd love to know how your doing!

  • hi i have had et since 1992 i am now 46 so you can tell it has no respect for age to start with i did not have any problems until i started losing weight and did not feel like eating my consultant arranged a ct scan i got told i had an infarction on the liver my consultant was brilliant i was put on hydroxcarbimde got told could not have children i got great support from my fiancee then few months later it was all over i knew it was more his mum not going to be a grandmother i also got allpronil incase of gout that was short term i am on hydroxcarbamide mon-thur 1 tablet i am shattered by the afternoon i dont let it get to me i have a fantastic consultant and gp i had to my gp as she knew nothing about the illness where my new gp if she doesnt know anything she will troll the internet and be able to give you an answer best wishes nicki

  • Thanks Nicki

  • has this helped you or has this made you feel worse

  • I appreciate everyone’s comments including yours nicki. I had wanted to say how hard it must have been for you to move on after your break with the fiancée. (I have some empathy, as my first husband left me when I was pregnant with our third baby, after falling in love with a 17 year old lol). I can laugh now, but it can be so hard when your already vulnerable. I do hope you are in a different place now?

  • the reason I have vensections is that my packed cell volume that is the % solids in blood goes over 45 and that makes it harder to pump and puts more strain on the heart . My ET may be slowly turning into PCV but my platlets still go up when i miss HU doses I was 48 when first properly diagnosed but on looking at previous blood tests it went back to 1986.My platelets at their highest were about 2 million Uk or 2000 Us measurements. These days they are about 200 to 400 Us measurements. I felt truly aweful when they were that high but these days i am not bad but do get fatigued so i have cat naps till i feel better. I do drink immoderate amounts of good red wine and a few fine whiskeys

    all the best


  • Hi Chris,

    Trying to learn all these new terms is a challenge. I googled Vensections but "packed cell volume" & "HU" ?.

    Partial to a nice glass of fruity red myself

  • Marianela

    So interesting to read about you all - having MPDVoice is great! When I was diagnosed there was nothing or no one to turn to. I was on Hydro for many years until last year I developed two awful ulcers on my right ankle (one of the symptoms of Hydra) - they were so painful - they have only just cleared up properly after 11 months but the site is very sensitive and sometimes painful - my GP has told me it will always be like that as many small nerves have been damaged in the area. I feel tired a lot of the time but then I put it up to age also and have never really connected that to ET. At present I am only on aspirin and my platelets keep between 550 to 600 - Im at the hospital for blood tests every couple of months - when I was diagnosed I was told that the suspected cause of ET was related to additives in foods and sprays used to keep crops pest free - I feel it is probably right. Has anyone else been told this?

  • No I have not been told there is a link to additives or food sprays, or in fact read it anywhere. All I've learnt is that they don't know yet due to lack of funding and research. Nice to hear from you!! I do feel so blessed to be diagnosed now and not 30 years ago when nothing was known. Must have been even more overwhelming

  • Marianela

    Yes it was overwhelming - I had never heard of ET before then. It is wonderful to share feelings - what we must be careful not to do is to blame our ET or other similar for all our discomforts and symptoms - remember that other ailments have symptoms also. When I was diagnosed with ET I was given a folder with some information and that is where it was mentioned about the additives etc.

  • Your right of course, although as I'm only a new recruit so to speak I can clearly remember what my body felt like before and after the med's. Wish I couldn't as it has taken me a while to accept that I felt great before (if not a ticking time bomb with platelets at 1845), and now am struggling day and night on med's. I think I may need to discuss trying something else at my next appointment Xx

  • Marianela

    I agree, it sounds like a good idea to try something else if the effects of the present med make you feel so ill. How is you count at present?

  • My platelets were 753 on 2.5.12, since then I have increased my Anagrelide in-take as the boss wants them down even more. I take 18 a week & 150mg of aspirin a day.

  • Hi Street Pastor - you will soon get your platelets down to acceptable levels. I have had ET for years (diagnosed) and really don't know for how long before diagnosis - it came to light when having an routine blood test at the surgery. Was on Hydroxycarbamide/Hydroxurea for a long time until I developed ulcers - was taken off Hydra immediately. Developed severe nosebleeds then.

    But am on aspirin now and am feeling reasonably well - Hope you feel good when I tell you that I am in my 80,s. We do live to be old!


  • Thank you so much Marianela, I'm sure things will turn out just fine and I will be stronger, wiser & more compassionate after this. None of our journeys are wasted, not unless we just keep them to ourselves. Glass half full, not half empty, right! x

  • marianela

    Good for you StreetPastor - I also believe that none of our journeys are wasted and we learn from our troubles. I know that at times it is not easy going and we all have our bad days. But try we must! x

  • I've had a rough time of things since I was diagnosed with ET in 2010,I've been on Hydroxycarbamide for 18 months now,was taken off it for 2 months,but platelets more than doubled in those 8 weeks,I've been up and down.I came out in lots of sores on my legs and back a few months ago,just had a biopsy,they think I may have Lupus.I didn't realise how positive I was until I was diagnosed,it's the way for me,I'm always tired and there are lots of things I can't do now,ie the gym,not got the energy

  • Sorry to hear you've had a rough ride. The gym you say.............I've always hated exercise so its the opposite for me, having to try and do something. Walking the dogs is where I've started, might move onto swimming on my good days. Do you have to work or can you take things at your own pace? I'm trying to just decide I have a new life now and instead of feeling upset about what has to change due to lack of energy / pain etc, I'm trying to view it as a new opportunity to create positive changes in my life. Do the things I've always put off. Mind set change as well ay............

  • Hi StreetPastor - I'm so sorry about how you are feeling. I hope all the supportive replies and experiences are helping you. I was diagnosed with ET 5 years ago, and am on Hydroxycarbamide and baby-aspirin. I am a 'model patient ' according to my haematologist, but her only criterion is how the numbers on the blood-test print-out look, as anything else I want to talk about she backs out of very hastily. (Consequently the 'model patient' leaves the consulting room wanting to kick the walls and slam the door hard.) Till now I have gone along with her view that the symptoms I am getting are unrelated to ET or Hydroxy, but having read other people's posts about things I have - extreme coldness in finger and toes, changes in skin condition, and thin skin on soles of feet, I am not so sure.

    What all MPD people need, as so many posts here demonstrate, is better emotional support and more consistent and informed care from the NHS; to me, this disease is as scary as cancer and just as unpredictable (I've had cancer, twice). The period after ET diagnosis was the most lonely and frightening of my life, and there was no NHS support. Finding the MPD forums and MPDVoice was wonderful. As for self-help - I find real relief in running and swimming; if I stop, I have less energy and feel more down. I know there are many who can't manage exercise at all but if you can, it helps.There are a few friends who are really good at talking me through the bad patches - so I rely on them and don't worry about the ones who think there can't be anything wrong with me because I look OK and can run a few miles.

    I hope you're feeling more positive now you know you've got friends on MPDVoice!

  • Hello Bramblepie - You struck a chord wi me there about the bloods being all important and the other stuff is glossed over or simply ignored. I saw a registrar last but one appt and he said my repeated infections and colds were unrelated to my MF and wrote a note to my GP suggesting I had a weak chest, What bobbins. I worked outside alot in winter for years with no colds or ailments. And the the other aches and pains he didnt want to know even tho my spleen is very enlarged. I went back to the hospital and complained and refused to see him again. Wont win any friends that way but at the end of the day when i leave the unit i still have to live with the condition, so im hardening up and standin up for a better service. . .

  • Good for you Jed. We don't have to be rude, but we don't have to lie down & give in either. I've even let them tell me how I'm feeling and said nothing in response................

    I know they don't have all the answers and it must be frustrating for them not being able to help, but it does rub salt into the wound when your met with no compassion and harsh words. Maybe working with people such as us causes some to harden their hearts to be able to cope with it all, who knows.........

  • You made me laugh with your statement: "Consequently the 'model patient' leaves the consulting room wanting to kick the walls and slam the door hard". You must have the same health care professionals as me! ;-)

  • I was quite taken aback when I read your post bramblepie as you could easily have been talking about my experience of living with ET.

    After nine years of putting up with various haems who regularly questioned my symptoms and even went as far as to say I was wrong I changed my haem.

    My haem also treated my counts and not me.

    The final straw came when I decided to apply for DLA and both my heam and my GP failed to support my application.

    When I mentioned about my fatigue I was told that a lot of people get fatigued failing to acknowledge that it is the no 1 complaint of MPN patients.

    I too used to leave appointments frustrated and angry.

    I now attend a more understanding haem 70 miles away from where I live.

    I agree wholeheartedly with your point regarding "better emotional support and more consistent and informed care". It is severely lacking with regard to MPN's.

  • Here, here ETphonehome! I'm convinced that this has caused me extra stress (and pain!) and need not have happened if handled correctly. This said I do appreciate the fact that things are changing and moving in the right direction.

  • Hi StreetPastor, like yourself I was diagnosed with ET last November (2011) with platelets high 950 and Jak2 positive. I was in shock and I am still processing and finding hard to accept such situation. I am on Aspirin, Hydroxycarbamide and Bisoprolol. I am very lucky that my platelets are under control and after different dosages now I am on platelets 244. However, in March I went through some serious pain, agony in my whole body and especially in my hip, knee joints and I was not able to walk. I was also extremely tired all the time. Painkillers very soon did not work. So I went and done research and find out that dairy products and wheat enhance inflammation in our body. So to start with I eliminated dairy products from my diet. Then I found out that fresh ginger root has strong painkiller and anti-flamatory properties so at the same time I started drinking fresh ginger root tea and eating it twice a day. In very short time my pain began subsiding and now I am containing it well with once a day ginger root tea. Even tough for me there is time when I get frightened and lonely I shake it off with believing that I am feeling well and that I am lucky in that I have very good medical care, that treatment that I am on is working and I am tolerating it well. I pray all the time and it helps a lot. I hope that this is of some help to you and other people with ET, MPD's who suffer with same pain, emotional issues and tiredness.

  • Thanks Light, I shall try some ginger! Notice you are also awake at 3am. Not much fun but glad I have friends at the end of the keyboard Xx

  • I felt same in 2008 when I was diagnosed with this never heard disease. But in time I considered in reality is a God reminder me to care myself in sense to don,t drink alchool, don't eat meat, don't spent nights and so on. Untill now only itching and regular presence to hematologist disturbing me.

  • Good morning cata, do you have to go to the Haematologist often then?

  • It is a blessing to have each other. This is as if we are a part of very special family, to help, support, encourage and walk together through these very different and special times in our lives that brought us together. MPD's, however, different, never heard of, health situations that we are facing, in a way God is doing something very special with all of us.

  • Light - There is definitely power in unity! Mighty oaks grow from small acorns. Be encouraged MPD voice, you are doing a great job.

  • Hello StreetPastor, I've had ET for 25 years so you can be assured that many of us live long and healthy lives. We do have rare and tricky diseases though and it's no "Walk in the Park". Early on, my journey was more like a "Stab in the Dark". I was diagnosed by an oncologist who turned me over to my internist once my platelets were normalized with hydroxurea and aspirin. The oncologist's attitude was that I wasn't sick. Well, the internist didn't keep very good track of my platelets and after several problems, I found a very knowledgeable, patient and caring hematologist who has followed me for the last 10 years. I have had no serious problems with ET since then. I have taken hydroxurea and 81 mg aspirin for at least 20 years. The reason for the meds is that my history and age (now 75) make me a high-risk patient,. I do have a little itching and my feet are warm and tingling sometimes when I first get into bed. Other than that, I have no symptoms, and lead a fun life of playing tennis, skiing, traveling, art and feel happy, healthy and blessed

    You are in a very positive position because much research has been done recently and you have youth on your side. However, your concerns are legitimate. It's insulting to be told it's a "Walk in the Park" when you are sick and frightened, which is completely understandable for anyone who is newly diagnosed and/or has symptoms from ET or the meds.

    You will learn much here and on other forums. Hopefully, you will find assurance that ET and it's symptoms can be controlled, It will not shorten your life expectancy and you can live a long, happy and healthy life. I hope your time in the lonely, confused and frightened room ends really soon!.

  • Jocro you've hit the nail on the head about what room I'm in. I made myself walk the dogs today, but only did it to see if it helped ease the pain some. Thank goodness we live on top of a hill with only sheep for neighbours. I cried my way round the hill. I think I will cut and paste your blog to my fridge as it brings hope. Thank you Xx

  • Good for you StreetPastor! How lovely that you have a place to walk with dogs and sheep to keep you company. I'm pretty sure exercise and fresh air are good for you and you can just cry away in private until you're done with it. The animals won't mind. Once your meds are straightened out, I think your pain will be gone and so will your tears and fears. Try to keep in mind that this shocking time will pass and that you have much to look forward to. I will be praying for you. xxoo

  • Big hug just for you Jocro Xx

  • Hi StreetPastor, Hope things are looking up for you. It's been a month since our last notes and I am wondering if you are on your way out of the blue room, have got your meds straightened out and are feeling a little better. Good luck with your new job in September.

  • Thank you so much Mo/56, I am also a Teaching Assistant in a very needy school. Well I was but had to finish today as I have not been able to work since going on med's. I am however looking forward to my new job in September, I'm going back to my old school (a lot less stress) and will be doing 1-1 lunch time supervision for one & a half hours, three times a week. I know if more hours become available I will have a good chance of getting them, just hoping to sort myself out a bit and then move forward in my new life. Your health support sounds amazing!

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