MPN Voice
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posture change

my whole body is chaning shape and getting weak. it start from head to toe. first it started from my joint of left shoulder, chest then down, leg joints,elbows,then every joint and posture getting change. i half body has been damaged and it has started to damage my right side also, i was drug addicted but now for last two months i haven't done any thing and my doctors see n say its all in your head and all stuff but i now what i m going through its pains, my movements are not proper, there getting weak,when i see my left leg its has change into c type shape. pls help me out what i am going through i real dont know what to do pls pls pls

3 Replies

Hi there. Sorry to hear about your worries - I have PV and in the last few months I have experienced real problems with my legs. I get a lot of pain in my muscles, bones and joints really from my hips down.

I saw my haematology consultant who was no use at all for this, claiming it is nothing to do with my PV, but saw my GP who thought my longish stay in hospital weakened my muscles and this was what caused my pain. He has referred me to a physio and even though this was only a few days ago the exercises the physio gave me have already made a big difference. My limp when I walk has reduced and my legs feel stronger.

May be worth having your GP do some very quick tests (there are things they can do to quickly identify weakness) and if they are unprepared to even do that you should ask for a second opinion. You know your own body far better than any poor, rushed and time constrained Doctor can in their 10 minute appointment slots, so finding a Doctor you can trust is essential for any chronic illness.

Hope you get this sorted!



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I think it's true ,,we do change shape ,Iv become round shouldered and lost my neck length ,,is it age ? I don't think so ,

I hurt in the shoulders ,and my joints seem painful especially later in the day ,when my batteries are running down ..I know we must expect these problems with age ,but my feet are very deformed now ,only comfortable ,when bare foot ! I do try to exercise and walk everyday ,in the warmer weather healthy ,drink lots of juice and water ,, as the time goes by ,more side effects become apparent .dealing with them is a day to day thing ,,,keep strong ,,

Twinkly ,, xx


I am sorry to hear that you are having these problems and are obviously in a lot of distress, but you must speak to your GP about this. Do you have a myeloproliferative neoplasm - MPN -, you don't say that you do, if you do can you tell me which one you have. Maz

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