How was your MPD diagnosed? What symptoms did you present with?
Diagnosis: How was your MPD diagnosed? What... - MPN Voice
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I caught swine flu, and high platelets continued after this. After that I was sent to the hospital for a JAK2, then a bone marrow.
I was pregnant with my 2nd baby and had high platelets throughout, I was diagnosed with ET at 37 weeks which was a scary. My only symptom was/is high platelet count at the moment and is managed with low dose aspirin.
hi i was diagnosed in 1998 have spent months searching websites, in the beginning the only people i could find with same diagnosis were in america ! and then there you are sat on my doorstep !! hope all is well with you and baby xx
Hi - Foss33, I would like to offer a note of optimism. I was diagnosed with ET at the age of 38 whilst pregnant with my son. It was picked up in one of the many routine blood tests that are taken during pregnancy - that was over 16 years ago in 1996. There was very little known about the disorder then, so I wasn't particularly alarmed about it as I guess ignorance was bliss! So for a good many years I simply took a daily dose of aspirin and was monitored by regular blood-tests. All the while my blood count remained under 1000. For the past few years (lost count - but certainly over 5 years) have been taking hydroxycarbamide (9 tablets per week). This has kept my count down to the mid 400's - I feel no ill effects and lead a perfectly normal life. I recognise that I am one of the lucky one's and that other people's experiences may not have been as fortunate. However, I am confident that research is moving on very rapidly particularly with the JAK2 inhibitor research and that with continued monitoring there is absolutely no reason to believe that I will not go on to live to a ripe old age. I am just thankful that it was discovered before it had produced any unpleasant symptoms. So take heart 
Thank you Amarylis for taking the time to reply to my post.
I understand what you are saying about ignorance being bliss, I kind of wish I was the same, I do find my self sometimes over analysing other poeples symptoms and comparing myself and then worrying although deep down I know I shouldn't do this, for Example fatigue I do find myself very tired some days but that could be due to the fact I have a young son and a 5 month old baby and I guess most mums have tired days. You have helped put a perspective on things, my last platelat count was in the 600's and I am only on aspirin I need to try and put this to the back of my mind and carry on as normal.
I am really pleased to hear that you have lead a normal life since diagnosis, thank you again
Andrea
I was sufferring chronic fatugue and passing out. Blood tests showed I had dodgy bloods since 2007 .was sent for more bloods in 2011 at the hospital . A radium injection and bone marrow biopsy showed MPD Jack 2 positive. Although its at the moment whats called unclassifiable and no teatment, I still suffer from extreme tiredness and constant itching, easy bruising.
We have some really useful hints and tips about itching and some solutions on our website which might help mpdvoice.org.uk/living-with...
I went to docs with chronic fatigue, flu like symptoms, done blood tests because i thought i was going through menapause. Had high platelet count and jack 2 positive. Find out next month whether i need meds at moment or not.
I was diagnosed in 2003 at the age of 33 after having an MI.
I had been at the docs with chest pain over the previous month which he thought was acid reflux.
Looking back I had been having classic ET symptoms from the age of 14 including migraine, chronic fatigue, tinitus and various other mysterious aches and pains (hip pain, pneumonia) but my docs never thought to give me a blood test.
I also went to the audiologist for a hearing test because of my tinitus but that was put down to playing in bands as a musician.
That is interesting as I also have had all these symtoms for years. Hip pain particularly bad but e-rays show nothing. I have had the same thing..its migraine, its acid refux, its fybromyalgia, its this, its that. Have also been told its physcosematic. Now I know I was'nt nuts after all. At the moment having bad feeling of being disoriented and spaced out. Been told its Vertigo. I never know what id MPD related or not.
I developed a clot at my spleen in january this year and when in hosp my platelets and other levels were raised. Since then have had a bone marrow which confirmed ET and I'm jak2positive. Been on warfarin since then and now last week started on hydroxyurea.
Through routine blood tests which showed high platelets, no other symptoms at which was in 2008/9. They tried a bmb but couldnt do it then in 2011 they finally got round to trying again and showed I have MF only on Asprin at mo. I have been getting a few aches and pains now.
I was first referred in 2005 as went to GP with fatigue and blood tests showed raised platelets, after 18 months was discharged from haematologists with no diagnosis and no further investigations apart from repeat blood tests (all consistently showing high platelets). In 2010 went to work and developed severely swollen finger (I'm a haem nurse so asked one of the consultants and was told to get referred back to them) after more faffing about was advised tests were inconclusive, finger could of been micro vascular clot but no test was done to check. Was told a BMB was only definitive way for diagnosis but consultant felt we should not do this! I did not find this acceptable and demanded a BMB to find out one way or another and transferred to a different consultant who was fantastic. Was diagnosed with ET in April 2011. Have probably had it since I was pregnant with my son as I looked up old blood tests from 2002 and platelets were high then. After diagnosis I decided it was now or never for another baby and thankfully everything went smoothly and now have a beautiful 7 week old son. I'm currently having daily clexane injections due to breastfeeding but will resume low dose aspirin at some point in the future.
I went to the docs about ten years ago with flu like symptoms which continued for about 6 weeks I then had a 48 hour nose bleed where my nose was cauterised twice but still continued to bleed - after a blood test saw my platelets were high and after a bmb was diagnosed with et - however have had migraines with visual auras since I was 16 and my hemotologist said have probably had this since then and I now rarely have these since I am on treatment - am now 33 years.
in reply to Dingwall1979
My symptoms seem to have been with me for most of my life and certainly since my 30s. I am now 63 and have had my diagnosis for 8 months. Like you, I have had the migraine with auras, more and more frequently which have now disappeared since starting on hydroxycarbamide. I have had bleeding gums for most of my life which I did not connect with any illness until diagnosis. For many years I have had periods of flu like illness which has not been investigated and it was only when my toes started to hurt excruciatingly and turn purple with aspirin being the only thing which gave me relief that I finally got my diagnosis. I firmly believe it is not a disease of age but that the symptoms become more severe and pronounced in older age, leading to the greater likelihood of a diagnosis.
I was diagnosed with et after high platelets were discovered in a routine yearly physical in 2008. I am JAK2 positive. For the past three years I have only been taking one 325mg daily ( which I am still taking). This pas Feb. after my platelets started rising rapidly I had a bmb. ET was confirmed and was put on hydrea but my counts went too low after a month. So now I am just on aspirin again and my counts are great, however, when they do reach that million mark I will be back on hydrea. My hematologist is very good and knowledgeable. I see him again in early July and hope my counts are still good. I live in the US.
audreyk53, 325mg Aspirin is too high a maintenance dose for MPN's.
It's generally recognised that around 75/80 mg is optimum.
I would suggest mentioning this to your haem.
I have MS and went to see my doctor in July 2010 because, even though it didn't seem typical, I thought I was having a relapse. I was very fatigued, felt quite sluggish, was getting very short of breath and really just felt very 'out of sorts'.
Luckily for me, he decided to run some blood tests. I had an urgent call from the hospital 2 days later because my haematocrit was, at that stage 65! I was confirmed as JAK2 positive and a formal diagnosis of polycythaemia vera was made. I then had a ridiculous number of venesections over the next couple of months which brought my haematocrit back to something approaching normal.
I have also developed ET and so have been on hydroxycarbamide for this since October 2010 (my platelets were at 1500!). Current dose is 1000mg 5x week and 1500mg 2x week and my platelets are down to anywhere between 500 and 700.
Like a lot of others, I also take low dose aspirin.
I always thought all the symptoms that I had were because I was fat!! Toes and Feet going white, obviously a sign that my leg arteries were furring up with fat!! I never went to the doctors until I had to have a medical ok letter to do a drastic meal replacement diet!!! Thank goodness my GP is brilliant and she insisted that I had blood tests for everything. This highlighted my very high platelett count and within a week I was seen by a haemotology consultant and two weeks later told I had JAK2 possitive ET... Looking back I had so many things that you are all talking about, the migraines and the funny light effects, bone pain, strange rashes. As a high risk patient I am on daily 75mg Asprin and 11 Hydroxycarbamide tablets a week. The possitive side to this... well I decided I couldn't do anything about what was happening on the inside, but I could control what I was eating and exercise more, so as to prevent Heart problems, Diabetes etc. I have now lost 5 stone and probably look the healthiest I have in many years!!! Yes I have the itches, fatigue and wiggly moments, but just now listen to my body and rest.
Congratulations on your weight loss suska, losing 5 stones is no mean feat and will go a long way to improving your health & wellbeing.
I too had loads of classic ET symptoms ( migraine, bone pain, tinitus, impaired vision etc) for years prior to diagnosis
Do you mind me asking which Haematologist you see and why you are considered high risk ?
in reply to ETphonehome
Hi ETphonehome... love the name by the way!! I think it was because I had some thrombotic events before I was diagnosed and the usual pins and needles in your feet and legs
ETphonehome in reply to
I see. It seems you're a fellow member of the "clotters club"
Diagnosed accidentally - I had a blood test at my GP's for something fairly trivial 5 years ago and a high platelet count came up on the results. ET jak2 positive was diagnosed following a bone marrow biopsy and for the past 4 years I have taken 500mg hydroxycarbamide 8 times a week and 75mg aspirin daily which keep the platelets under 400. I had no unexplained symptoms before diagnosis but as I've had skin allergies all my life it's difficult to tell if rashes and itches are due to that or ET. I have developed Reynaud's over the last two years, (circulation problems which mean finger-ends and toes turn an exciting range of colours from white to purple if the temperature drops below about 17 degrees, ie like most of this summer), but the haemotologist says this is unrelated to ET and is coincidental. Generally the ET hasn't affected my life too much, I've so far been lucky; I just try not to think about the scary future, the possibility of strokes and any results which show the drugs ain't working!
Diagnosed 2007-8 (ET JAK 2). I had a blood clot in my portal vein, got pancreatitis and oesophagus varices as a result of all that.
Taking per day: Hydroxicarbamide 2x 500gr, propranolol 2x10mg,clopidogrel 1x 75 gr,omeprazol 2x 40 mg.
My hands and fingers are freezing when under 20 degrees (My home is warmest in the area!)and I did suffer from Migraine with aura before medication started.
Now I have joint pain and tiredness, hip pain and some back pain. Sometimes itches but not always. A few times I have been dizzy as well.(not to mention the side effects from the medication)I bruise easily as well, so no Ice hockey playing or boxing for me!
I feel generally fine, most days, but now and then I don't. I do eat healthy, as I always have and I drink my glass of red wine, as the doctor thought I should.
As I work in an environment , where I am exposed to a lot of various bacteria and viruses, I am surprised that I am the one that never need to be off ill,from work! My work mates are often! I see my doctor about every 6-8 weeks.
But, I must say, when I became ill, I lost about 10 years of my life.
Hi Swede, interesting you have the cold hands problem too, and someone else has mentioned it. Despite the haematologist saying there's no connection, I still wonder. But even if there is a link, there's no knowing if it's a result of the ET or the hydroxycarbamide of course.
My Haematologist says that there is a connection to the cold hands and feet.
She can't really do anything more than advise me to keep warm. I have been slightly cold all my life but nothing like this. I am born in the wrong country...
I don't understand why many doctors don't consider the cold hands and feet as a symptom of MPD. It stands to reason that anything that causes the blood flow to reduce will cause less blood circulation at the extremities, thus resulting in cold fingers and toes.
Obvious connection perhaps?
in reply to Swede
Hello Swede and Bramblepie, yes I have really cold hands and feet and only felt warm when we went away recently, to get some sun!! I did have this slightly prior to being diagnosed, but it is much worse now.
Swede in reply to
Hey, I agree! Sun is the thing! I lived in Spain for a while and never was cold..
Now, my house is an Oasis, always around 23 Degrees. Tropical animals would love it here!
(P.S Going to Spain on Friday again)
my diagnosis was a disaster: slightly odd bloods picked up during routine minor op, went to GP, GP prescribed additional daily iron as she thought I was anaemic! Of course, this was about the worst thing possible as it kicked my bone marrow into hyperdrive. also had to go and see a gastroenterologist before i was allowed to see a haematologist, despite there obviously being nothing wrong with my gut - and they told me I could keep taking the iron. Eventually light dawned but i still wonder how many years of good health or life that has cost me.
LouisePRVVolunteer
Heavens what a plethora of differing answers!
I started with visual disturbance about 2003 (like migraine ie broken glass effect but no headache) then April 2009 ghastly head and neck ache, lack of concentration.
July 2009 blood vessels in eye burst, gums bleeding and a face like a very ripe tomato ( gp still clueless) in the end I started with the Mpd itch. Fortunately ( or not) I d had hepatitis A 16 years before ( with symptom of same itch) and connected current itch to a possible blood problem, and so booked myself in for a comprehensive blood test. Took another 4 months for positive diagnosis. Moral of the story, be your own project manager, and if you re not happy, book a
blood test.
Im 58 and in May 2011 after a night out i noticed i was having trouble using my right hand , i put this down to a previous problem i had with a trapped nerve in my neck. Then i started having problems with my memory, now this really worried me. I went to the doctors 3 times but they did nt help just put me on a higher dose of blood pressure tablets. My friends and family told me to check into the A and E which i did a few days later. On the day i checked in they told me i had had minor stroke and also had blood disorder which had caused it. This later was confirmed as PV. I feeling much better now have had venasections and am on 7 tablets a day including hydrox and aspirin.
Cheers Peter
I can relate to most of the above I had sever itching over 10 years ago and have many allergies so no answers given. I had been tired for years but had a stressful and busy job so this was all put down to job. I did discover that platelets were over 400 10 years ago but this was considered normal and I was not informed. During 2011 started to suffer from sever headaches, neck pain, heart palpitations and light headedness, impaired vision (aura), pains in chest, sleeping problems and fatigue - all put down to work stress. Although as blood tests showed high platelets I was sent for some scans on internal organs, which came back normal and blood tests were taken over a period of 6 months which continued to show platelets rising. my doctor consulted a Haematologist who requested a JAK2 test. In the meantime I collapsed at work and had a number of 'fits'. I was then informed that I was JAK2 positive and had also had a number of minor strokes. My red blood count was also high and I had to start on weekly venesections (now 6- 8 weekly) I take hydrocycarbamide 2x 500mg daily, asprin daily, Simvastatin 40mg daily, Omeprazoal 20mg (to protect stomach), Trazodone 150mg to help with sleep, pain and fatigue. I take paracetamol for the pain and have just moved from Tramadol to codeine. This is on top of my regular antihistamine and asthma medication. I feel like a walking drugs chest but I am beginning to feel better than I did 6 months ago.
I was diagnosed in Nov 2009. Had suffered for years with extremely heavy periods (following second baby), silent migraines - visual disturbance, chronic bone pain - mostly hip pain, also chest pain. GP put chest pain down to IBS. Suffered with a constant level of fatigue for some months and just felt really unwell so I then went back to the GP who ran blood tests and noted high platelets (600+) and high WBC levels. Haematologist confirmed jak2 pos and ET diagnosis. I've never had a bone marrow biopsy though, should I?? Treatment is watch and wait with low dose aspirin. Lower stress lifestyle has brought platelet levels down a bit and reduced some of the symptoms.
I am 47 years old and I had been feeling unwell for the past three years with fatigue and a cloudy head. I went to my GP where I had blood tests taken for 5 months in a row. Everytime they were coming back abnormal but my GP spoke to a haematologist and decided it might just be me so left it. I then had a stroke in March earlier this year (2012) and was diagnosed with PV. I am now taking 2x 500mg hydroxcarbamide, 1x 75mg of aspirin and 1x 40mg simvastatin. I am feeling so much better than I did three years ago.
I was diagnosed in November 2011 at the age of 53. My symptoms were: fatigue, burning pain in the fingers and toes, acouphene in the ears.The blood test during an annual medical test rated high platelets.I was sent to an hematologist and through a blood test, JAK2 was confirmed. Then the bone marrow biopsy was positive. The diagnosis for me is myelofibrosis, stage 1 and the treatment consist of a low dose aspirin each day and a treatment for my high blood pressure. I also had a lot of stress because of the diagnosis and I am since a few months doing a psychotherapy, yoga and acupuncture.
I became very dizzy in the shower one morning and felt quite unwell. Went to GP who thought I had an inner ear infection. After a couple of weeks and no improvement I had blood tests. Results showed high platelet count (900), further tests showed JAK2 positive. This was in 2007. For about five years I had been going to my doctor complaining of extreme fatigue and had been tested for thyroid problems and diabetes but was told I was fine. My migraine headaches became more frequent too. I used to have silent migraines with just visual disturbance (aura) but it developed into Cluster Migraine. It was such a relief to actually get a diagnosis - ET.
I see my Haematologist every three months and now take 1g hydroxycarbamide,low-dose aspirin, Simvastatin and Lansoprazole daily. My platelet count now sits between 300 - 400. Condition is well managed. I still suffer from fatigue often and a very itchy scalp, particulary after a shower and sometimes restless legs in bed but am otherwise well. Exercise definately helps combat the fatigue.
Had symptons for ages in various forms but all in 'one' offs eg double vision for a couple of months, aching joints later, tiredness etc, think my GP thought I was a bit of a malingerer but was not until I went overseas to teach and went for routine medical third yr because thought ~I was going through an early menopause (44)that ET was diagnosed had fabulous treatment for next 3yrs and same high quality when my contract overseas finished and I returned first at Nottingham City Hospital now at Guys. Have been on Hydroxycarbamide now for 9yrs and counts go up and down but pretty atable, however, despite good diet, excercise get very very tired, which is difficult with working full time.
I was diagnosed in Jan 2012 at age of 37. I visited my GP in October after getting fed up with feeling so tired and aching legs. A blood test showed raised platelet levels but also that in past 10years my levels have been above 500 but had been ignored and blamed on virus and having 2 children!Jak2 positive and bone marrow biopsy confirmed ET.
I have had migraines, aching legs and fatigue for years but always told you have a virus.
Currently taking aspirin but struggling with the fatigue with 2 young kids, 2 dogs and busy life!!
Reading through these postings is almost like a double-take on my own situation; suffering from tinnitus since the 70's (put that down to playing Led Zep too loud !), regular migraines since the 80's. Then it all went pear-shaped in 2010; had a one-off fainting episode where I didn't actually pass out but had to 'go to the floor' which scared the heck out of my father. Then started getting what I thought was indigestion over a period of 2-3 months resulting in a visit to hospital where they promptly blues and two-ed me up to Kings College London. After removing two clots from my heart, leaving a third behind, they told me I had PRV which had caused the MI. A number of venesections only made things worse by increasing my platelets so whacked me on Hydroxy. Now taking 9 x 500mg Hydroxy per week and 75mg aspirin, 1.25 ramipril, 1.25 bisprolol, 10mg atorvastatin, 15mg lansoprazole daily. So far so good with all levels holding reasonably well. I've come to not think about the prv at all until the night before my routine blood test (which is now at 12 week intervals - long may THAT continue) when my tummy turns to mush in anticipation. Biggest problem at the moment ? Nausea 24/7. But as my gp says, I'm here to experience it
I was diagnosed with Jak 2 positive ET in September 2008, unfortunately this was following two miscarriages and then 2 years trying for another baby. Went for a blood test to see what the problem was and the dr advised my platelets were high, had bone marrow biopsy which is when diagnosis was made. My platelets were always hovering around 1200but recently been creeping up, most recent count 1423. I have since gone on to have a little boy so all good in that department. My white blood cells have been increasing for the past 18months so consultant thinks diagnosis might change to PV in future but this confuses me as everything I read about PV refers to increases red blood cells and mine are normal?!! I see her every 2months and currently take 75mg aspirin daily although if platelets increase to 1500+ I have to start new meds. I am now 33 so because of my age the consultant hasn't yet decided what meds I would take because of the possible effects on fertility.
I was diagnosed in 2011, aged 69 as a result of GP recognising I had a history of high platelet counts.
I had worked overseas all my professional life and, on my return to UK (1997), put down feeling cold to missing the heat. My family has a history of 'bad chests' so I assumed I had inherited this when, on my return, I picked up colds and was unable to throw them off. (terrible coughing fits which didn't end even when I was sick.) I used to stay in for 6 weeks or so and usually only got/felt better when the weather got warmer. I usually ended up at the GP's after 3 weeks or so of a cold and was immediately put on anti-biotics as a 'preventative'. For the next 15 years this happened at least once a year and often 2/3.
I had mentioned what I now know to be various symptoms of ET to the GP -
'dizziness'/slight vertigo, headaches on waking which cleared after an hour or so and pain in the fingers. These symptoms were attributed variously to catarrh, inner ear-infection, osteo-arthritis and so on. I also mentioned being tired. Actually, I can't fault the number of chest x-rays, tests for blood pressure, thyroid, diabetes or anti-biotics etc I was given until my GP suddenly recognised my various blood tests showed a consistently high and rising platelet count. This led to a diagnosis of ET (JAK positive) and am now having my medication reviewed. So far so good.
However, one of the most interesting things for me is that I no longer seem to have a bad chest! I have not picked up a cold and been forced into purdah as a result since I started on hydroxycarbamide and asprin. My head doesn't ache when I awake and there's no vertigo. I do have considerable pain in my fingers which sometimes wakes me and I suddenly get very tired. I try to exercise my way through the fatigue since attending the London Meeting last Nov but I sometimes just sleep for a while if I've been very busy.
Isn't it good to hear whaat has happened to other people? Thank you , MPD Voice?
I was being treated by my GP for high blood pressure and was getting really painful headaches and terrible itching. I ended up having a tia, and my peripheral vision was affected so I couldn't drive for 6 months as I had had 2 accidents in 2 days! when my GP quickly referred me to the acute ward at Stepping Hill, Stockport. I was soon transferred to the stroke unit, where they soon diagnosed I had PV. They took 2 pints of blood off me and then later venisections as and when necessary. Eventually the haematologist said I had become anaeimic and because I had already had a tia, he said I was at high risk and put me on hydroxycarbonide.
Diagnosed with ET November 2011 with a platelet count of 1845, (Jak2 negative). I went to the doctors as I was constipated and had reached a point that I had no urge to push which is the bit that bothered me, I was back & forth to the Doctors as my body started to swell and burn etc due to being jammed up. Finally I said to yet another Doctor, no one has done any tests on me not even taken my blood pressure, and so the basics including a blood test were done............
I had no other symptoms, yet when I look back I have had fatigue periods for years, always feeling cold and saying I was born in the wrong country and terrible neck and head pain for 25 years. My platelets must have been ok 17 years ago though as I had my youngest child then.
My main symptom was 'Priaprism' - this is when the blood flows into your penis and doesn't flow out again - this is very painful and was lasting from 2 to 7 hours. My Docs thought I had a urine infection or allergy. My local A&E thought I was some kind of weirdo ! - until one day it lasted over 8 hours and I ended up in theatre having the blood physically sucked out with a syringe worthy of a Carry On film ! The Doctor turned the petri dish upside down & my blood didn't move - it was so thick ! I am currently under Guys Hospital and I am the only case they are aware of that has presented in this way !
I had bloods taken after attending A&E with stomach pains which showed high platelets. From middle of December 2014 to 1st April 2015 I had an ultrasound, CT scan, MRI scan, endoscopy, colonoscopy, gallbladder removal and bone marrow biopsy and was finally diagnosed with MF on 20 April (my 44th birthday).
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