Have not been well for a few years inconclusive diagnosis of sarcoidosis after lung biopsy

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Just wanting to know if any other people have been told they have sarcoidosis but lung biopsy has been unable to confirm although this was done via broncosopy, have had load of symptoms for last few years incl chronic migraine, my ct scans of lungs are full of scars as i had adult chickenpox 5 yrs ago which caused pneumonia and affected the lining of my brain, have recently developed skin lesions but not loads also sore joints and lost loads of hair, was on a potent steroid but now going on a milder one, at a loss with this cause is seems really uncommon and hard to get confirmation that it is this disease, has anyone had similar situation where lung specialist says thats what you have but no confirmation, how the hell can you get a definite answer...thanks!!

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  • Posted

    I don't mean to laugh what you said but join the crowd I got it and still trying find answers I feel you
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  • Posted

    Hi Janie,

    yes, sarcoidosis diagnosis without biopsy confirmation is quite common. Broncosopy is not the most reliable method to have biopsy, so maybe that's why it came out inconclusive. However, the other symptoms seems like sarcoidosis. If your lungs are full of scars and your doctors told you tha it's also fibrosis, it means that you're stage 4 sarcoidosis. This means that you have to take care from now on and find a competent doctor to monitor you. Every time sarcoidosis will be active (it will be periods of time when it will become dormant), it will cause inflammation and more scars inside your lungs, lowering your lung capacity.

    All the symtoms you have, including scars in your lungs, lupms on your lengs (and not only) and sore joints are clear sings of sarcoidosis. I'm not sure if the lesions you're talking about are actually lumps not not; sarcoidosis doesn't cause lesions, though I'm not sure about skin sarcoidosis.

    I also don't have biopsy confrimation, but doctors can diagnose this condition based on symptoms, x-rays and breathing tests. In about 90 percent of cases, steroids cause hair loss, so it's not related to the condition but to the meds you're taking. also, steroids can cause osteoporosis, so take care. 

    Good luck and all the best!

     

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    • Posted

      Hi I'm new to all this but thank you for telling me my Stage, as my doctor said he didn't believe in that!!!

      So now that I've had this for up to 10years and now 45% of my lung is fibrotic I just sit at home and wait?

      How do you know when you are in a flare?

      Perdnisone and the broncho inhaler are just peachy!

      nancy

       

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  • Posted

    I imagine that it might be quite difficult for a one-off biopsy to differentiate between tissue where you have your chicken-pox scars and sarcoid granulomatous tissue. Very frustrating for you, as the procedure isn't pleasant. As granny 1957 says, it seems we all have some form of this hit-and-miss diagnosis. Just hope that you are getting the right treatment to alleviate your symptoms.
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    • Posted

      You got that right telling her that me myself I just don't why than don't know about this because a lot of people have it what have is important to
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    • Posted

      I had a definitive diagnosis about thirty five years ago (lymph node biopsy) but being asymptomatic I thought nothing of it again, until a few days ago when I found out I have a near toxic blood level of Vitamin D - almost certainly caused by granulomas in my body, as they convert inactive Vitamin D to the active form, thus upsetting the body's own protective balancing mechanism.  I'm now 69 and have another hard to diagnose auto-immune disease, polymyalgia rheumatica, and now bone thinning, so I don't really know where to turn.  It feels like I'm in a spin.
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  • Posted

    How are you supposed to reply on here
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  • Posted

    I was diagnosed as having cancer in 2000. Turned out it was Sarcoid. My lungs collapsed during the biopsy which nearly killed me.

    If the doctor believes you have fibrosis or Stage 4, then do not do the biopsy. Too risky.

    In USA, the doctors treat symptoms and not the overall disease. Thus, these forums will help you understand more than the doctor.

    It is up to you to manage it. You must track foods, chemicals, environments that can inflame the the disease to eleminate that risk. You may have to give up golf because of pesticides on grass. Or certain goofs or aftershaves. Only you will know.

    That is the by Sarcoid is such a lonely disease and creates delirium at times to understand what is happening to you

    You can do it. Take notes. Hang tough.

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    • Posted

      Absolutely right- and much the same in the UK. There is, at present, no overall treatment for  Sarcoid. Most people get a diagnosis because of lung problems.The respiratory specialist may not have sufficient knowledge of other symptoms, so we can get moved around opthalmic,skin and other specialities. We need more specifically trained Sarcoidosis consultants !
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  • Posted

    You need to get thyroid check i am sorry you going through this it does make you argue it does us all but if have stress it will help it move more I. Take it one day at a time and pray to God he carrying me it isn't Me god bless you granny 1957

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