New Diagnosis - Essential thrombocythemia

Recent diagnosis
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Hi Everyone

I think I posted this in another thread as I am getting used to how the Forum works. So I apologise.

I was diagnosed with Essential thrombocythemia two weeks ago after 5 years of headaches, fatigue and bruising.

I was finally diagnosed as recent CTs and MRI revealed I have a blood clot in the brain which thankfully is subsiding through treatment.

I have lived with high platelets (750), severe headaches/fatigue/nausea on and off for about 5 years. However I’ve been bruising badly for 10 years.

I am about to finish my doctoral studies in a health related subject.

I started having severe headaches and high platelets when I started my Doctorate. Despite the high platelets, as headaches were on and off , I was otherwise very healthy, fit & active, with good biomarkers.

As a specialist doctoral health worker myself with CT scans initially being clear, it was not investigated further.

I think this might be potentially why I was misdiagnosed with migraines and informed maybe the stress of my studies might be a causing or triggering factor.

Today I feel both a sense of shock and sadness but also relief that I listened to myself and my body, and that I am being treated. I am also shocked that many healthcare professionals missed my conditions and are so unaware of blood conditions.

Being in the health field myself, I am usually the one offering advice and support but this time I am here to share, connect and ask for support myself.

The hardest for me right now is reassuring my ageing parents who are not in this country and don’t speak English, and are worried about me.

I am also feeling isolated from friends and family physically because I moved in another part of England for work.

I look forward to connecting with anyone who has lived with the condition and is willing to share and offer support.

I’m very grateful for this resource.

Thank you very much.

Mia

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Hi @Mia2025 and welcome to the forum.

It sounds like it’s been a long 5 years to get to this point. I completely understand feeling relieved to finally know what’s going on but the anxiety of all the things that follow. Whatever blood cancer we have, I’m sure all of the forum members have shared these feelings and will be able to share their experiences with you.

I think telling loved ones is so hard because you want to protect them. It must be even more difficult when the family is not close by.

I have copied a link below which has useful discussions around telling family and friends. The support line number is at the end. Please give them a call if you think it would help to talk things through before you have those conversations.

It must feel really strange to be on the other side of things. Who have you got supporting you at the moment?

Now you’ve found us you definitely won’t feel alone. On here you can say how it really is for you. Sharing experiences has so much value and knowing other people understand is a godsend.

Please let me know how you are doing. Remember, we are all here for you.

Lots of love

Nichola x

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Dear Nichola75

Thank you very much for your thoughtful and kind reply.

Kind Regards

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