Diagnosed by chance

[Wesleygrange2a]

I was diagnosed following a blood test before I had an epidural for back pain. I had been having blood tests every six months for a thyroid problem and all the signs were there when they looked back at those tests. Because I had always been anaemic with heavy periods, once I became menopausal and my periods stopped the rise in my red blood cells was gradual and went unnoticed for quite a while.

[Trocken]

Sorry to hear this, I too was diagnosed by chance I changed GP surgeries, she looked at by blood test results after i’d Just had a course of b12 injections and asked what investigations had been done as my platelet count has been high for years, when I said ‘nothing’ she showed me the screen, for the past 13 yrs (which was as long as My notes went back) my platelet count was always highlighted red, apart from 2 tests which was when I was pregnant. She was lovely and explained that it could be an indicator of cancer. She contacted the Heamatology team and the diagnosis started 2 weeks later. It was a real shock, it certainly explains many of my health problems over the year, particularly complications when giving birth 😢 I Don’t know about you, but I’m annoyed it’s never been investigated when the years of blood test results were there 😢

[Applesnpears]

I suspect that most GPs dont have time to look at trends in blood test results unless you are reporting some specific symptoms.

For many people the early stages of an MPN produce no obvious or distinctive symptoms. As a result a routine blood test with slightly elevated platelets or red blood cell count is often dismissed as due to an infection or something trivial that will pass with time. It's only in retrospect that the trends become obvious.

It must be hard being a GP.

[Hydrox]

I was diagnosed 7 years ago, ET Jack 2, after an unrelated blood test, my gp said that my records showed high platelets from 13 years previous which had not been picked up, my platelet count was 950.

[daibare72]

Dave from Wisconsin here! I was diagnosed with Myelofibrosis going on 6 years ago when one of my orthopedic doctors called for an updated MRI of my right knee in preparation for arthroscopic surgery. I suffered severe joint pain in 4 different joints for 2 years and 3 months with my right knee being one of the joints. The radiologist reading the scan noticed a darkening of the bone marrow in my long leg bones and reported it to my orthopedic who then called for an MRI of my entire thigh. Knee surgery cancelled and I was referred to a specialist at Froedtert Lutheran Memorial who, upon reviewing MRIs of my right knee from years earlier, saw the same dark bone marrow (fibrotic). The radiologist from the earlier scans must have overlooked the bone marrow in the adjoining bones when reviewing the knee joint. It turned out that all of the joint pain for over 2 years were severe gout attacks which can be one of the symptoms of Myelofibrosis. One of my doctors chuckled and commented about not one person considered to look at my Uric Acid level, a simple blood lab!

[Stephen399b]

I had a blood test because of a really painful toe and found platelets a 920. Three and half years ago

Small veins in toe were clogging up - and I had other symptoms once I knew, that I had been ignoring or putting down to getting older.

Thank heavens for a bit of chance - I think it unlikely Doctor's would have picked it up without some reason for full blood test.

On HU (x10/week) and asprin and all going ok.

Stephen

[Cja1956]

I’m sorry they didn’t catch it earlier. I think most of us are diagnosed by accident. I was diagnosed 11 years ago because I went into see my primary care physician because I was having constant headaches. My platelets were about 600,000 and he referred me to a hematologist and I had a bone marrow biopsy. I was diagnosed with ET Jak2 positive. My hematologist prescribed Hydroxyurea and my headaches went away.