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Where is your Sarcoid hangin out these days?

Posted , 4 users are following.

john10431
john10431

Mine was discovered in my chest 6 years ago, and since has worked its way down to my liver and spleen, but not before leaving some scarring on my lungs and messing up my heart's ignition system. Now I have electronic ignition - a pacemaker.

So, could I please hear from any members who have Sarcoid in the liver/spleen area? I'm wondering if there are unique symptoms of Sarcoid in that part of one's anatomy, and if there are any helpful treatments for it.

Thank You - John

0 likes, 4 replies

4 Replies

  • jaswindar21649
    jaswindar21649 john10431

    Posted

    Hi John , the only part of sarcoid that I have left is that I have a " red nose " they originally diagnosed sarcoidsis because of the " white lumps " on my lungs but that has now cleared up after the results of my last x ray , I am currently on a course of steroid tablets and hopefully should clear up my red nose ! So unfortunately I am unable to recommend any treatments for your liver / spleen , good luck with your treatment !
  • tangles
    tangles john10431

    Posted

    Hi John

    Yes I have liver and spleen both. Both are enlarged, this was established by Ultra Sound. They have done nothing for these organs since finding their enlargement. Writing this post makes me think that perhaps I should follow this up myself as GP's are so lay back about sarcoid issues.

    Without ultrasound I would not be aware of these issues. The only clue can from low platelet count which triggered the research. I believe the over active spleen is disposing of too many platelets giving me a low count. As the enlarged spleen was stable, not increasing in size it was decided to leave it there. Nothing else has been done about it or the enlarged liver.

    Let us know how you go; I might learn a few things from you.

    Regards

    Tangles

  • AmandaPC
    AmandaPC john10431

    Posted

    Hi John,

    I have been told that i have sarcoidosis in the spleen and liver, possibly also down the front of my left shin under the skin, it is one of the areas that is more rare, but yes i'm one of these rare people like yourself.

    I have changed my diet and eat alot of anti inflammatory foods also take tumeric tablets.

    I have sharp uncomfortable pain down the left side of my body for months, also very very tired, and get bad headaches.

    Hope this helps 

    Amanda

  • AmandaPC
    AmandaPC john10431

    Posted

    Hi John,

    In 2010 I was also diagnosed with it on my lungs but afyer 7 months it was doment so was discharged from the clinic but prob like yourself it has creeped back.

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