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cardiac cachexia

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kenbee
kenbee

my history is heart attack and stents in 2005.Was feeling weaker last couple of years,in septemberhad sudden weight loss particularly from buttocks inner thighs and upper arms.This was accompanied by fever type symptoms and red chest which would leave white hand prints. My gp confirmed my worst fears.Had a bnp blood test in jan,which showed a reading of 20,which does not make sense.I had already been diagnosed with mild cardiac failure last year.Last cardiologist was dismissive of me based on blood test and good lv function.I CAN ASSURE ANYONE WHO GETS THIS DISEASE WILL KNOW IT.I am very weak now but have no chance of palliative care because officially I do not have the disease.My young gp will not question a cardiologist,even though he knows what I have,he has prescribed furosemide to reduce fluid retention.I am now skin and bone,but gaining weight,which the cardiologist dismissed as fat.I have shiny uncomfortable legs,what else could it be.My backside is skin and bone,with the muscle like jelly.Now my joints are creaking. sad

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    First things first... Change your GP and change the Hospital / Consultant you've been referred to as you are being treated disgracefully, I'd even consider complaining to the GMC because you are plainly not being treated in accordance with their 'Duties of a doctor' guidance (look it up) smile

    This leg thing sounds like what's called Peripheral Vascular Disease, basically it's Ischaemia, look up Ischaemic Leg / Foot, is this what you are talking about? Some Doctors can have an infatuation with weight,, in their simplistic minds if you are gaining weight you are well, if you are losing weight you are ill (they'll completely discount the fact that you have to work damn hard to put this microscopic amount of weight on),, perverse as it sounds if you want to be treated with some slight urgency it's best to be losing weight not gaining it :?

    I have Ischaemic Leg / Foot and it isn't pleasant, the simplest thing you can do to help is exercise, simply walking will do, yep it hurts and you'll hobble more than walk at first but over time you can notice some improvements,, anyway tell us how you are getting on :ok:

  • kenbee
    kenbee

    Posted

    I am much weaker now and dont think I will live much longer,I will just have to bear it.The fluid I am retaining is worse and the fluid seems related to the position of my body.My arms and hands are skeletal.I had to go to hospital on the14th april,I had diarrhea and exhastion but blood test for gastroenteritis was normal,this disease effects your whole body,there is no doubt this is what I have.Incidentaly I still have a 3 inch bruise from this blood test-not normal for me.This bnp blood test is supposed to be 98% accurate,frankly I dont believe it,or I am one of the 2%.I cant lay on my left side now because of frequent palpitations.I WOULD INVITE ANY DOCTOR WITH A GOOD KNOWLEDGE OF CARDIOLOGY TO GIVE ME A FULL PHYSICAL EXAMINATION WHICH I HAVE NOT HAD.This bnp blood test seems to be the holy grail! well it certainly is not in my case.Tests??? take a proper look at the poor patient.
  • Guest
    Guest

    Posted

    Since you feel that you haven't got long you may aswell sell everything and blow the cash by going private smile
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