MPN Voice
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Do you get really full when you eat ? I just don't manage a whole meal these days ,

Yet I don't lose an ounce on the scales .why is that ???

I eat real healthy nowadays, fruit as snax ,vegetables ,all sorts ,I feel fine, but if I eat bread , meat , or cereal based food I get uncomfortable ,it sure interrupts my sleep to feel so full. Have you noticed this change since diagnosis ??

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Hi Twinkly - - you need a new battery in your scales they don't last for ever. It's a good sign to maintain a healthy weight with MPNs, Ive been steady for years but dropped to 8' 10 in last few month which isn't great when you consider my calorie intake, which i cover in beer most days LOL By comparison you are a picture of health and goodliness I wouldnt worry too much if I were you. You'd b a goddess if you were on my planet xx

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So there you are JR.i guessed if I moaned loud enough you would surface,I hate the fact iv got a tyre that could keep the titanic afloat!!! And I'm having trouble taking off with these lightweight wings, I worry about you .how are you doing ,has that clinic mentioned ruxolitinib again to you yet?? Why don't you write to Clare Harris at st Thomases and ask for a second opinion ,I promise you it would be worth the effort,I'm so good on this Majic trial ,they look after me so well.I'm getting spleen scanned on Friday,they say I'm a blooming miracle my bloods are normal now it's 9 months and counting,you take care of you , Twinkly. X

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Hi Twinkly, yes I get full really quick too and also not losing weight! I do eat healthy with fruit and veg but do seem to need carbs too or have even less energy. Just trying to eat a balanced diet with treats too - I think we deserve them. kind regards Aime

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Aime,you are so right about the treats ,lets make life worth living ..I love strawberries ,

But I miss fish and chips tho.. So I slipped of the wagon , Big mistake ,,,, I was up for 2 nights in agony, a lesson learned,,, Keep twinkling ,,xx

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Twinkly, I lost weight just before I was diagnosed and although I am steady now only weigh 50kgs. Have no appetite and am sitting here now wondering what I can have for dinner. I enjoy my treats, especially chocolate! Keep well xx

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Hey twinkly, I was admitted into hospital

For three weeks and lost two stone in that time. I have put most of that on and so grateful I feel stronger being slightly bigger. I have cut gluten and wheat out of my diet along with 80% dairy. Not sure if it will make a difference but as you said I need to give it time. I feel less bloated. Although I have a weakness and that's sweeties and ice cream hence the 80% dairy....I know they do free from but it's just not the same.....I hope your doing well and the trial is working for you. Take care xx

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Been to a steam rally with sasha ,he's a star ,,he raised £56 for MPD having his picture taken and being kissed ,,cuddled,,and stroked ...He's working for the cause !!

( that's Sasha in the picture) ,,

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Hey Twinkly, good news about the Majic trial, do you have ET (I do) and please tell me more about how it helped your condition.

Many thanks,

Al

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Hi AI. I could go on and on about my problems ,but I try not to moan ,I was lucky I realise that to go to addenbrooks and get help just in time, I didn't ask ,,yet I was given the opportunity to go on the Majic trial, August last year.. My horrible flushes and fatigue has all but gone ,,I'm going for a scan on Friday ,jelly on me belly time to look at my spleen and liver ,,ill let you all know if it's twins , or triplets,,I have P.V. And clotting ,

Oh yes and rheumatoid arthritis too ,but I'm still twinkling. Xxxx

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Good for you! I wish you good luck!

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