How long before you are diagnosed?

[shiftzz]

I know I had symptoms in the late 1990's and never really took them seriously Yes I had brain fog, yes I was tired etc etc Saw the GP, suggested it was an ear infection.. Eventually got diagnosed in 2014.When I spike to my consultant two weeks ago, she said that most patients do not get diagnosed for about 20 years. Thinking about it she was possibly right.I know I have not been feeling right for years, thought it was an ear infection, infection, sinuses etc etc..Now I know different, I wonder how long it took for you to be properly diagnosed?Oh yes one GP suggested that my brain fog was "psychosomatic paresthesia"

[dbus1417]

Had I not been required to have blood tests every 2 years for work my diagnosis would have been delayed until I felt sick. I am one year in and still asymptomatic! I know it won’t be like this forever so I am enjoying life more fully now. 🤙🏽

[Mostew]

Interesting question I reckon I had JAK2 OVER 20 years before diagnosis.

Good you are doing well . Are you less tired clearer head etc?

[Lena70]

7 years! I kept on complaining about fatigue and it kept on being disregarded. August 2019, after a several week vacation in Colorado and hiking and sleeping at elevation is when I sort of fell apart. I saw my doc upon returning home. It took until January2020 for me to get a diagnosis while I was tested for everything except what was wrong. My old lab work shows high platelets and basophils as far back as February 2013.

[Wyebird in reply to Lena70]

That is awful that old lab work was dismissed for 7 years. Did you take action?

[Lappool in reply to Lena70]

it’s funny, I live in Colorado & based on the WHO guidelines half the CO population would have PV lol. The ranges for HCT, HGB, and RBC’s are very much different

[EPguy]

I had slightly high PLT starting in 2013, at 645 by 2016 and 1000+ 2020. But what brought me into Dr was a feeling I needed to go to emergency late 2020. It was different from the long covid I had.

My GP was more interested in the barely high WBC than the way high PLT.

[Wyebird in reply to EPguy]

Haha that happened to me originally.

[Kari1961]

6 years! Diagnosed with High BP, Supraventricular Tachycardia in 2009 - non-smoking, healthy eating, not overweight. I was fatigued all the time and felt like I had constant mild flu. Headaches and dizziness. Had a stroke in 2012.

Bloods were queried often, then in late 2014 I developed a large blood clot on my hand (it was the size of my hand) Had more blood work and 7 days later was called for a Haem appointment and PV was first mentioned - more blood work and was diagnosed PV Jak2+ in early 2015. Haem looked back over my blood results, which showed high HCT since 2009.

[Minu68]

10 years.....The start was night sweats, which the doctor put down to anxiety. Bone pain started about 2 years after, no answers from doctor on this. Being tired a lot was put down to depression.

I was having blood tests every year for all this time due to my depression medication, but the doctor never referred me to haematology. When the pain in my right hip became bad enough for me to struggle to walk much, I was finally referred for an x-ray, as physiotherapy was not helping. It was then discovered I need a new hip, and it is only because my hip consultant referred me to haematology as he was concerned about operating as my platelets were so high.

It was a total shock to get the MPN diagnosis, but since it has explained a lot of the health issues I have experience. Haematology were not impressed that I had had high platelets for at least 10 years before being referred, especially as diagnosis was easy as I am JAK2 positive.

[Orangeboykitty]

I was diagnosed properly on the very first day. I had gone to the ER with confusion....I knew I was confused! I couldn't write my name, couldn't use a computer, couldn't steer a shopping cart. They did all kinds of tests on me but the only thing wrong was my blood count. Hemoglobin was 23.9 and Hematocrit was 67. After all the other tests had been run, a hematologist came to see me. He looked at all the test results and then looked at my red face and red eyes. He told me he was going to take a test that would show definitively what I had, but that would take 2 weeks to come back. But he said he knew what I had and was going to start treating me that very night. It was my first phlebotomy. I had them every other day for the first week to get my Hematocrit down quickly. Turns out the hematologist was correct. The JAK2 test came back positive. I'm in Israel and the hematologist, who is now my doctor, had seen so much PV that he knew immediately.

Actually, I'm sure I had had PV for about 2 years before I went to the ER, but I never asked anybody to diagnose me. There were no symptoms except for the red face and red eyes. When symptoms hit they really hit!

[Wyebird]

Hi I had a blood test annual that showed high platelets I questioned the reason they wanted to repeat it. My son was getting married I was just unenthusiastic about bridesmaids coming to stay for fittings . That was definitely not me!The 2nd was also high but I didn’t give it a thought. Then approx 4 months laterI had a funny turn and ended up in A and E. The consultant queried my platelets. I went back to the doctors. Meanwhile I went and got iron tablets because I thought I was anaemic !!! I saw a heamotologist in the late September diagnosed in the October.

So within the year I suspect was quite a quick diagnosis

[Solyesh]

Interesting question. I had my first abnormally high platelet reading in 2014 at 707. I know back in 2002 platelets were normal (380) so I assume somewhere in that 10 /12 years the jak2 kicked in. I remained asymptomatic until official diagnosis via BMB n Dec 2020. Had yearly physicals from 2014 - diagnosis and at each reading my platelets were high and climbing. Finally when they reached over 900 my GP referred me to a hematologist who, given my history of continually elevated platelets, referred me immediately to an MPN specialist (current doctor). My GP told me to start baby aspirin at my first elevated reading and since the treatment protocol (being in mid 30's with no history of thrombosis) would have been the same even under an official diagnosis (aspirin and monitor) feel that the missed years before diagnosis were fine.This does pose a question. In many countries we tend to be monitored fairly regularly until about age of 18 by pediatricians ( also there is a fairly regular vaccination schedule in many countries) - but after 18 tend to "fall off the medical radar" unless there is a known risk or condition. Given the possibility of interferons or future medicines putting conditions like MPN into remission, might early diagnosis (even asymptomatic) become more important? I have encouraged all family members (especially those over 30 years old) to have at least bi-annual full physicals including blood work and CMP etc. In most cases regardless of the potential medical issue, the earlier one detects it the better (and not knowing until required while perhaps easier mentally/emotionally doesn't work for me personally (would rather know; know earlier than later and work on possible options).

[EPguy in reply to Solyesh]

The Silver MPN group (INF pioneers) strongly suggest early intervention. They say why wait till it's progressed while other cancers are treated early.

[Threelions]

About 5/6 months.Very lucky as GP knew something not right on 2 consecutive blood tests. Referred me to local hospital haem who suspected ET. Did another blood test for Jak2. Was told result (jak2+ confirmed) a couple of weeks later & referred immediately to Prof Harrison at Guys.

Just goes to show that it really does seem to be luck of the draw. I feel blessed that my GP suspected something & got the ball rolling when she did.

[Bears23]

During my annual physical my doctor noticed platelets were elevated, sent me to hematologist. Hematologist discussed MPN’s and recommended a bmb to confirm suspicions. So, I found out relatively quickly.

[MWxxxx]

I hadn't been feeling right after my 2nd child was born in 2006. Bloods were all ok during pregnancy but in the days after giving birth I just felt odd. Kind of confused and not with it. I raised it with the midwives who found I was anaemic. Despite just giving birth they seemed surprised and put me on iron tablets. I remember asking my GP to take another blood test when I finished the course but he said there was no need. I continued to feel odd: very fatigued in the mornings and exhausted walking anywhere. But somehow I could push through it and by lunchtimes I was ok. Of course everyone put it down to having a new baby. Then I started to get dizzy spells, joint pain, breathlessness and continued fatigue. I had lots of scans and I remember asking for blood tests but was told I didn't need them. Most of my symptoms were put down to being tired and GP's kept offering me anti depressants and told me I was too anxious - basically all my symptoms were in my head.

Then in 2012 i needed a knee op and they took bloods as routine. They found my white blood count was high and told me I had an infection. I had to wait several more weeks and they took another blood test. This also came back high and I was told that it must just be "normal for me". The op went ahead and I remember feeling really peculiar in the days following the op - completely disorientated and confused.

By 2014 my symptoms were getting worse and worse and eventually my GP agreed a blood test. I was told I was anaemic and was put on iron tablets again. After the course, on this occasion they took bloods again and found that my red cell count was really high. This is the bit that gets me really cross - not just with the GP but with myself. The GP told me that it was an odd result and just a blip and not to worry about it. I wanted another blood test but he told me it wasn't needed and I, stupidly, walked away (worrying). I fully intended to go back after a month or so and ask again for another test but forgot.

A year later I went back to the GP feeling poorly, they did an ECG and found my pulse was really high and I was sent to the Medical Emergency Assessment unit. They did loads of tests and told me my white cell count was high. They kept testing and sending me away and testing again and it kept coming back the same. In the end they just told me they couldn't find anything wrong and discharged me. They thought I might be a bit anaemic so put me on iron tablets again!! Finally, after another round of blood tests where my red cell count had gone sky high, my GP realised what I had and referred me to Haematology. And guess what ... Haematology didn't want to know. I had to go through a whole new round of scans and tests and eventually after a lot of persuasion Haematology agreed to see me. One simple blood test later I was found to be Jak2 positive!

What makes me so angry is the number of years in which I could have easily had a stroke or heart attack - I feel so lucky to be alive. But the lasting damage is that for all those years I was been consistently told my symptoms were down to mental health and anxiety - that the symptoms only existed in my mind.

[47069 in reply to MWxxxx]

I feel sorry for you that you were rejected so many times for a Jk2 blood test….. the iron pills were doing you more harm than good….some drs. Are so stubborn, they won’t listen to you, they don’t like to be told what to do…..GP’s have a lot to learn , when in doubt they should refer you to a specialist… you think those gps are paying for the blood test….. that makes me so angry….I am jk2, also CLR positive ET…. I hope you will treat you and you will feel better soon

[Katyak]

I was diagnosed with ET Jak 2 in 2015 but I almost certainly had it for about five years prior to that as I started having scintillating scotoma migraines then (which I now understand are a symptom). My diagnosis came about from a blood test for something unrelated but for a few years I had struggled with what I would now call fatigue, aching legs and brain fog. I'd mentioned some of this to GPs along the way but it had mostly been brushed off as other things. And I had convinced myself it was just in my head.

[hunter5582]

I was diagnosed with ET about 30 years ago. A very alert PCP immediately referred my to a hematologist the first time he noted thrombocytosis. I was otherwise asymptomatic. I plugged along mostly being managed by a PCP until about 2013 when i had a spike in symptoms. The hematologist I went to treated me like I had ET. In 2018 I was diagnosed with progression to PV. Turns out the progression happened back in 2013, so I was improperly treated for 5 years. My old hematologist fired himself and referred me to a colleague with greater expertise. I also started consulting with a MPN Specialist at Johns Hopkins.

Unfortunately, many physicians lack knowledge about MPNs. Misdiagnosis and failure to understand the secondary/constitutional symptoms is quite common. This is true even with some hematologists. Many of the doctors I see know little to nothing about MPNs. I make sure that they are aware of the PV and how it can manifest in various ways. I insist on holistic care from all providers but know I must be the one to make that happen. It is quite common for me to provide information to physicians about PV and how it may bear on the issues we are dealing with.

It is a truism that educated and assertive patients receive higher quality care. Pasive patients do not. It is up to each of us to educate ourselves about MPNs and actively advocate for the care we need and deserve.

All the best.

[Anag in reply to hunter5582]

I agree with you 100%! I know more than most haematologists now. I’ve been to so many, with a long list of questions. Once a doctor fails to answer my questions, or tries to but can’t, I’m off to the next. It cost a bit, but I am much better off and my doctors and I are team. They learn from me too. On top of that, lots of studying! 🙂

[veryoldman]

First call for me was anemia three years running with the platelets going up and RBC moving in the other direction. Starting in year four, ET, CALR, was confirmed by BMB. Still have not been treated for anemia despite RBC 3 or less--40% below the lower metric on the scale my lab uses. Heme is just laser focused on achieving the magic 400 for my platelets. Now that Covid seems contained, I've started looking for a new doc and something to replace the HU I've taken for the past five years. Hopefully the new doc can find some med that doesn't leave me absolutely exhausted from the time I get up until I go to bed, made worse by class A brain fog 24/7. We'll see. Good luck to you.

[CalL1981]

I had slightly elevated platelets for 15 years before I was referred to a haematologist. It may even have been longer than that but I don’t have blood tests from before then. I was told that was my normal. It was when it increased to a level that couldn’t be dismissed as my normal anymore that I was referred to a haematologist. She diagnosed me within 5 minutes and confirmed with BMB a week later. I wasn’t right for years before the diagnosis.

[Cakeface]

5 years before I was diagnosed I started with tinnitus in one ear. Then other symptoms came on and increased quite quickly just a few months before I attended A&E.A few years before the tinnitus , I gave up being a blood donor and I often wonder if my 3 donations a year were actually keeping my bloods under control?