Thought I would update my journey. Female 75. 4 years Monoclonal gammopathy of unknown significance (MGUS). Paraprotein started at 8 , now 12.5. Tested positive for Jak2. Had a bone marrow biopsy last week. 6 monthly blood tests. Suspect have an Myeloproliferative neoplasms (MPN). Any thoughts on where I am please.
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Hi @Juliet3 good to hear from you again.
Please do let us know what happens at your next appointment when you get your results.
I find it helps me to write down all my fears, questions and practicalities for appointments.
Look after and be ever so kind to yourself
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Hi @Juliet3,
Thank you for updating us. Sorry to hear that you now have suspected Myeloproliferative neoplasms (MPN) as well as Monoclonal gammopathy of unknown significance (MGUS). This is understandably a very worrying time for you.
I can see that you have posted on another thread about your headaches. Do the team think this might be related? I have enclosed some information on Myeloproliferative neoplasms (MPN) here which you may find helpful Blood Cancer UK MPN
We are unfortunately unable to comment on your diagnosis at this point but would encourage you to discuss all your worries and concerns with your haematology team. Do you have a follow up appointment with them soon?
I hope others on the forum will share their own experiences with Monoclonal gammopathy of unknown significance (MGUS) and Myeloproliferative neoplasms (MPN) with you.
Please be kind to yourself and know that you are not alone. You can get in touch on 0808 2080 888 if there’s anything you’d like further information about, or if you ever just want to talk things through.
Take care
Fiona (support services nurse)
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Thank you Fiona for your response. I don’t have a team, only a Consultant who phones me twice a year. He has a strong accent and I have to concentrate hard on my mobile phone to hear him. It also make it difficult to ask questions.
I am not sure where I should be posting and forum etiquette etc.
The results of my BMB and Spleen Ultrasound will be available on 5th May.
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Maybe request a face to face appointment with your consultant for the 5th May? You can call the haematology secretaires and request this if easier for you.
You can post or reply to any thread you wish to. No etiquette police here 
Please keep posting and let us know how you get on.
Kind regards
Fiona (support services nurse)
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Fiona I have phoned the Secretary several times. Been told you only get face to face if you have Cancer. Need that diagnosis first.
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