Confirmation of Essential Thrombocytheania

[bluebird567]

Hi to all the lovely people I have read about and conversed with on this site and who have given me some great advice, support and links to relevant articles on the subject of ET.

Now that I have been officially diagnosed, I feel that I am now a full member of a fantastic community - MPN Voice.

I will continue to read how everyone is getting on and help anyone else if I can as I start my journey with this new challenge.

Very best wishes to you, your health and wellbeing.

[Cat1001954]

goodluck I have ET too

[hunter5582]

Glad to have you as a part of this wonderful forum, our MPN friends and family.

Wishing you a long and successful journey.

FYI - I noted you posted in the past about an acoustic neuroma. We can have cooccurring conditions when we have a MPN. I have NF1, which caused a rare adult pilocytic astrocytoma (brain tumor) that we found when I was 63. These cooccurring conditions make consultation with MPN Specialists all the more important,

[bluebird567 in reply to hunter5582]

Thank you Hunter. Glad to be aboard. I had never heard about the rare tumour you had and hope it's been well and truly sorted although I am aware that tumours in the brain or near the brain stem are particularly difficult to deal with. So far my tumour has stabilised. 🙏

Coincidentally, my son has segmental NF1 , I think they call it mosaic NF1 now but can't be sure. It just affects one half of his body. And he has an optic glyoma - I think this name has also changed since he was diagnosed.

Funnily enough I also have problems on only one side; the acoustic neuroma, a kidney removed, two parathyroids removed - and would love to talk to an expert at some stage. Or maybe it's just coincidental.

I did ask if I could be referred to a MPN specialist however my haematologist says that all patients are discussed with the myeloid multi-disciplinary team (MDT) who are a panel of specialist, all senior experts in the field. I can't really ask for more than that.

From what I can gather, it seems here in the UK, different regions of the NHS have different policies.

All the best.

[Spanelmad]

Glad you've a diagnosis and now can move forward.

[Plavers]

welcome, this forum can be so helpful and is always welcoming.