Does anyone on here have ET or an MPN but their Jak2, CALR, And other mutations were all negative?
My hematologist said my gene mutations came back negative, high platelets fluctuate up and down, but he wants to do nothing, he just gonna monitor my labs every six months. Still having headaches, dizziness, body aches. I’m not happy not knowing anything for another six months.
Have you had a BMB? This would give an answer to if you have a MPN or not. Some people are what they call triple negative. Are you platelets always above the upper limit & how much do they fluctuate? Usually they can flutuate by 100 read one way or the other but usually with ET over time you see a steady increase if not medicated.
Has he prescribed you aspirin? If yiu are below certain levels, under the age of 60 & no risk factors such as previous thrombotic event, heart attack, high cholesterol etc... then it's standard practice to be monitored every 6 - 12 months & usually just on aspirin. The aspirin helps to stop the blood cells sticking but won't reduce your counts.
What is a BMB? I am taking no medications. However I do natural vitamins for blood thinning like ginkgo, ginger, and tumeric. I have high cholesterol and high SED rate.
He told me just to monitor. My last platelets were 450, 515, and now last one a week ago went back down to 405,000k. It’s weird it went from 515,000k to 405,000k in two weeks. Always tired and headaches and dizzy.
Sorry, bone marrow biopsy = BMB. To be fair, your levels aren't particularly high & the variation is standard variation across that period. I would think that maybe tests for other reasons for your symptoms would be beneficial as they are for many different conditions not just MPN. It's important to not just look & put it down to slightly elevated platelets. Most MPN consultants ask for things to be checked even with a diagnosis rather than assuming its MPN related as they don't want to assume it's MPN & miss something else. Have you been taking the vitamins etc.. since you have been seeing consultant or before? Sometimes natural supplements can cause them to be raised. Your consultant is unlikely to worry too much at your levels, mist, but not all patients are diagnosed with figures at 700,000 into the million & then treatment is started at the higher end. Try not too worry & discuss looking into your symptoms with your GP for other causes.
Hi, yes I am triple negative ET, I was diagnosed in 2003, I had raised platelets which my haematologist said suggested ET but did the bone marrow biopsy to be certain, but of course way back then that was how they did it. Maz
So the bone marrow showed ET?
He told he is not recommending that right now, I just want it done to know rather than want another 6 months. Because my platelets went from 515,000k to 405,000k in two weeks he said he didn’t feel bone marrow was needed right now, that we will check in six months platelets again and go from their, hate waiting.
Depending on your symptoms, you may not need anything other than possibly aspirin. However, getting a better answer to your possible status as having a triple negative MPN should not wait for another 6 months. Many hematologists really do not know much about treating MPNs as they are rare disorders. Suggest you consult with a MPN-expert doc. Here is a list mpnforum.com/list-hem./ .
Ok I would want to see a MPN specialist, I will look thank you, I need to find one that takes my insurnace.
If I have two raised platelets over time that could just be reactive platelets but they can’t say why, they just monitor.
It’s really stressful not knowing a diagnoses and the hematologist just saying “oh well just monitor” ugh
I can understand that. It is the trend over time that matters. A few labs over 450k could be a number of things. You sound symptomatic for typical constitutional MPN issues, but is impossible to know. Fear of the unknown can be worse than having a firm diagnosis. Hope you get answers soon.
I haven't even been told what my gene mutation is! I get the impression that patients are not supposed to be interested in what they've got!
Hi I’m triple negative I had all the tests including BMB all negative but still had high platelets when just on aspirin. I’m now on Pegasys & my platelets have come right down & I’m feeling much better for it
I have the same I have ET and Jak2 Negative I started Hydrea a month ago 1tablet 500gms now today my Platlets were 897 now 842 they haven’t come down much so I start 2 tablets tomorrow which will be 1000mg not happy
Tiredness, headaches, dizziness, body aches ... it doesn't seem reasonable that you should be expected to put up with these symptoms, which are clearly causing you distress, for months on end (while waiting for further tests) if relief is available ... On the other hand, one can understand that doctors feel unable to offer relief until they understand the cause of those symptoms ...
For dizziness, have you tried drinking more water, especially if the weather is very hot where you are?
Do you recall having any nasty infectious illness in the period before your symptoms started? Sometimes people have an illness (such as glandular fever/Epstein-Barr virus) and recover but are left with "post-viral fatigue", perhaps because of the way their immune systems (over)reacted to the original viral infection ...
I wish I could be more helpful and I hope that you get some relief very soon.
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