MPN Voice


Well I have some of the results of my bmb and my haemetologist was right in her assumption - I am in the early stages of MF it appears. So goodbye Polly and hello Mylo. It is hoped that Prof Harrison will be able to see me once my haem has written a report. Feel genuinely lucky to have had such care and also for the care to come. Good news is, I still feel quite good apart from not sleeping and so very tired. Best wishes to all x

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Hi Linds. Sorry to hear you now have MF, but well done for being so positive and so pleased to hear you are feeling well in yourself. Please keep us updated and I hope your care continues to be great. Melanie x


Hi Linds, sorry to hear you now have MF but keep in touch and I am sure some of the other MF sufferers will support you as well as the Polys and ETs! Glad to hear you are feeling well and your care has been good. I think it makes a difference to know that the medics really do care! But we all care so keep being so positive. Aime xxx


Sorry Linds to hear that. Glad you feel well just now though and hope it continued. What were the changes that made your haemo think you had MF?

All good wishes.


Morning CrazyDaisy,

Well, my red counts stayed low for three months, 42 - 44 - 41. I was thrilled thinking that the regular venesections had worked but my haem thought it strange after two years of predictable behaviour and she wanted to know why. She wondered if I was bleeding internally anywhere (really scared me stupid I can tell you) and she asked me to have a bone marrow biopsy done. I thought about things for a long time and in the end after discussions with my GP decided that there was nothing to be lost by having it. I will be honest, I was just scared. There may have been other indications but the haem did not allude to them to me - it was just the red count.

The biopsy was fine, expertly done and not that bad but the results were as she suspected. I have not gone into things too deeply because she has written to ask if Professor Harrison will agree to see me so I thought I will wait til then to ask all the questions.

So where I am now is in waiting - still feeling well but with the usual fatigue. Actually I do think I feel better not having the blood removed as it seemed to shake me up all over. Crazy Daisy, I am being optimistic about the future, a little apprehensive but it's all an adventure isn't it. One of the most important things is the support from all of you and the support we give each other. Truly could not manage without it.

Best wishes x

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