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Help !!!!!!

Posted , 6 users are following.

claire027
claire027

hello,. I got diagnosed with Sarc July 2016 could not walk, joint pain lung problems but gradually I feel I got in control and back to my normal self again ( few aches and pains but ok ) so I had a week a few weeks back I wasn't well then last week some small blisters and a hot itchy rash appeared on my lower leg from then my knees hands feet ankles have all swelled up and I have joint pain to the point I'm really struggling, the doctor says it's not the Sarc it's Parvo b19 virus ( has anyone had this is it related to the Sarc or do I need a second opinion ?? )I'm so fed up ......Claire

0 likes, 7 replies

7 Replies

  • jean68563
    jean68563 claire027

    Posted

    Hi Claire I have something very similar to what you are describing. I was told it was Erythema Nodosum. I a,so have Lufgrens Syndrome which is also to do with Saroids. I hope you get some relief soon it is well worth looking up these two and see if it bares any resemblance to your problem. 

    Regards 

    jean 

    • claireb027
      claireb027 jean68563

      Posted

      Hi thankyou, I've had erythema nodosum before and you right it is just like that without the red lumps, but I will look into lufgens syndrome so thanks I need all the help I can get ,. Stay well. Claire

  • Nickademus
    Nickademus claire027

    Posted

    Hi Claire

    Had the same - Erythema Nodusum and the Consultant told me this is Greek for red spots! its an indicator of Sarcoid. My red spots were on my lower leg, blistered and I was told by another Dr they are Sarcoid spots. Yet another Dr told me there isnt such a thing! One thiing I have been told that is consistent, that the spots and rashes show on the legs when you have Pulmonary Sarcoid as its the bodies way of showing an internal condition in an external way- ie. two legs reflect each lung and you cant see inside so the body shows us on the outside

    What I have learnt is 2 things; in 5 years from Diagnosis, I have days that are 'normal' and every now and again i have days when i think Ive made no progress. Im having a really tough day today - but ive been running aound getting ready for Christmas, done too much, im very tired and my body has reminded me I have Sarcoid. So just resting.

    As for swelling, joints, legs, in particular ankles and feet and take medication for water retention - related to Sarcoid. The 2nd thing Ive learnt is that Drs dont know enough about it. So you need to lead them in how you feel and not be fobbed off - as we all have been

    Enjoy the Christmas break

    Nicola

    • jean68563
      jean68563 Nickademus

      Posted

      Hi I agree with everything you have said. I told my Dr what it was and even took pictures of my 

      shins to show him  efore he actuLly believed me. It is such a shame not enough is known about this illness that is why we have to find out for our selves with each other’s help. A merry  Christmas to you x

  • Guest
    Guest claire027

    Posted

    Hi Claire

    Sorry to hear you're struggling. I know you can get dermal sarc and my consultant is always asking about rashes etc. I don't have any. Sarc is so confusing with so many symptoms that could be other issues. No one seems to realky know. Have you seen a dermatologist? Are you in the UK?

    Hope you get some answers soon.

    Best wishes

    Dee

    • claireb027
      claireb027 Guest

      Posted

      Hi thanks, I am in the uk, This week I've been referred to the rheumatology department but I think your right the first thing that happens to me at the start of a flare up is a rash, burning, itching I will ask my doctor although I have been self diagnosing and I wondered about lofgrens as I have got Sarc had the rashes and the on going pain is in my ankle ???? Who knows ( not my doctor haha !!!! ) Stay well Claire

  • kempes
    kempes claire027

    Posted

    To everyone  in this forum. This disease is granulomatous  disease.  So , which bacteria due to granulomatous tissue  in the body, lung and  heart. Get tested  for any Fungal infection, Candida, Aspergillosis and any other, they are  a lot.  Get tested for Mycobacterium Tuberculosis , or Micobacterium avium complecs- MAC.  This bacteria change the tissue in the human body. . Do not believe  in  treatment with steroids, before make sure there is no infection still working in your body. Ask to see infection disease consultant. In most the cases is TB,  fungi   or maybe autoimmunity problem.  Ger test for ANCA antibody which is  prove  of autoimmunity reaction.  Good luck.   Your health  is    that for you have to do every things.Regard!
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