Hello. I am 39yr old female with ET CALR positive and have had a BMB that showed grade 2 myelofibrosis. My platelets at last check (Dec19) were 1190. I am not on any medication, not even aspirin. I have 44% Factor Von Willebrand (whatever that is?) and that is the reason for no aspirin as I understand it.
I am reading so much in the press about patients in 30's and 40's showing no symptoms of Covid suddenly having a stroke or blood clotting as a result of the Covid they did not even know they had. I am petrified. I live in Madrid, Spain and here the Coronavirus Crisis is extreme.
Lately at night I feel this tightness behind my knees in my legs and am so paranoid that it is DVT. I also have dull pains in my hip bones it feels like. For the last two nights I have taken an ibuprofen just to get to sleep as I have such insomnia from anxiety and then I imagine the sensation in my leg to be much more intense than it probably is as its all I can think about.
My appointment with my Haemotologist is 7th May only and while he speaks some English I always feel like I am missing stuff or he is not giving me the full story as I dont speak any Spanish. I am wondering if I should just take low grade aspirin every day until my appointment just to have added precaution. I did email him and asked if I am high vulnerability and he did not respond to that part of my email.
So scared.
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May2019
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Not sure I can help a great deal, however, we do share some similarities in our MPN.
Dovme's advice below is exceptional, and I would try to attend that Webinar if that's at all possible for you to do so...
In any event, I too am Post ET / MF, CALR+ Type 2, ASXL1+ & my first BMB was also Grade2.
Happily, for me, since changing my diet and starting serious consistent exercise., my last BMB showed a molecular reversal, back down to Grade1 (?)
I personally, do attribute that reversal to following an anti-Inflammatory diet, Intermittent Fasting and my cycling, (exercise), regime... However, one of my doctors believes the Jakafi might also have something to do w/ it too... (?)
I am also Von Willebrands Syndrome (VWS -acquired (?) Type1 or 2?), I also take low dose aspirin, and I have already had two (2) TIAs (minor brain strokes). However, all of that seems to have settled right down, for the present ,and in my own case...
I was diagnosed almost Four (4) years ago... and so far ... I am managing well I believe...
My Platelets were 1.7M upon diagnosis, and they have been between 800-1M for the last 8-9 months or so...
Because I am also concerned about having another TIA, and I'm presently awaiting a trial that is run out of the USA, but will be recruiting here in Sydney, as well. It is a combination therapy of Ruxolitinib w/ Navitoclax. The latter, Navitoclax is supposed to help reduce my platelet levels...
I have tried other drugs too... However, and in your case, the medical fraternity tend to try to avoid medications when patients are younger than 50 yo etc.
However, they do and will prescribe, if you are deemed as "At High Risk..."
If I were you, I might write to Prof. Harrison at St Thomas & Guys and ask for her opinion...
Two (2) reasons:
1. Language barrier, avoiding miscommunications is paramount, in my view...
2. Far more importantly, Prof. Harrison is an MPN Specialist of the highest repute...
Maz, the coordinator on MPN Voice, might be able to assist you further, as you have a very real & genuine concern, in my view...
Hello May, we can understand your anxiety at this time, it is scary enough when you are diagnosed with a MPN but even more so during the Coronavirus outbreak.
You should talk to your doctor about the pains in your legs and knees, if you are concerned about them being DVTs, which should not be ignored. You said you have emailed your haematologist, was this for advice about these pains, just wondering if he is aware that you are experiencing this.
As Dovme has said, we are having a webinar tomorrow to discuss the advice issued by the government for people with MPNs, perhaps you can join the webinar, use this link to register, the webinar is open to anyone regardless of where they live, just remember the time difference
You really do need to discuss your concerns about your diagnosis and any medication with your haematologist, and as you are concerned about the language barrier, perhaps you could take someone with you who speaks Spanish so that they can interpret for you so that you are sure then that you are not missing anything.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Feeling so tired and fed up 
Starting hydroxyurea and scared
I have PV with no symptoms
Newly diagnosed and scared
So much for BUPA medical
