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Isolated Cardiac Sarcoid...anyone else out there?

Posted , 4 users are following.

reneeb
reneeb

I was recently diagnosed with ICS (3 days ago) and realize the information being given isn't necessarily matching what I'm finding online. Likely due to the fact that they don't want to deliver a poor prognosis.

Is there anyone else with ICS posting here?

Thanks,

Renee

From Vancouver, Canada

 

0 likes, 11 replies

11 Replies

  • sharon26982
    sharon26982 reneeb

    Posted

    I have not heard of ics there are 2 types acute and chronic not isolated 

    Your immune system fights infections in your body by releasing white blood cells into your blood to destroy germs. This results in inflammation – a swelling or redness in the affected part of your body.

    Researchers think that sarcoidosis could be caused by something in the environment that stops your immune system working properly, and causes it to attack healthy parts of your body instead. Research has also shown that, for some people, the risk of getting sarcoidosis is related to their genes.

    Occasionally, more than one member of the family can get sarcoidosis, but there is no evidence that it is infectious or passes from one person to another.

    Your symptoms will depend on what part of your body is affected by the condition

     

    breathlessness and a dry cough

    tiredness, fatigue or feeling ill

    red or sore eyes

    painful red lumps on the shins

    swollen lymph glands in the face, neck or armpits - these can feel like sore lumps

    rashes – usually on the upper body

    painful joints or bones

    an abnormal heart rhythm

    In some cases, symptoms come on suddenly, such as swollen glands, fever, tiredness, lumps or rashes on the legs and joint pains. However, they don’t last very long. This is called ‘acute’ sarcoidosis.

    If your symptoms develop gradually and last longer, this is called ‘chronic’ sarcoidosis. There are often fewer symptoms, but they can get worse over time.

    Some people don’t experience any symptoms. If this is the case, your doctor might only discover that you have sarcoidosis if you are having a chest X-ray for another reason.

     What are your symptoms😃

    • reneeb
      reneeb sharon26982

      Posted

      Thank you Sharon, I've talked to 2 teams, once each about this diagnosis (the cardiac and the respirology teams) and the description of acute vs cronic has not been used.  In looking at the literature of cardiac sarcoid I'm going to assume its chronic as the literature states that while it can go into remission it returns 100% of the time.

      Out side of an isolated incident of VT which landed me in the hospital with multiple heart tests to follow, I have zero symptoms.  My heart though is "very" damaged (their words) and the biopsy shows sarcoid. 

      As a parent of a child with a not-well-known defect I very much understand the importance of reaching beyond the doctors and talking/meeting people who are living with the disease/disorder (?? not sure even what it should be classified as).

      I so much appreciate everything that's been shared here.  Thank you.

  • sharon26982
    sharon26982 reneeb

    Posted

    Sorry I'm sharon and I have chronic sarcodosic

    i was very upset when firt told - but that was a year ago I still work full time but I have had to change my car to an automatic and I have help doing some types of house work - I take steroids and have done for nine month now - I have stiff joints dry cough 

    and my right hand is very stiff - I would struggle to get of the floor now - but I take it a day at a time - 

    • reneeb
      reneeb sharon26982

      Posted

      Have you found any improvement with the treatment?
  • Nickademus
    Nickademus reneeb

    Posted

    Hello I have Sarcoid but not Cardiac Sarcoid. I can only tell you of my experiences. Im 2years since diagnosis and still on Prednisolone. In my experience the medics know far less than they think they do and it presents its self different in everyone. I suppose it depends on how severe you have it. remeber it a rare condition and they dont know how it develops and progresses.I hope you get the support you need and whilst its a shock in the 1st instance, easier said than done is to have a positive mind about it. 

    Regards

    Nicola

    England

    • reneeb
      reneeb Nickademus

      Posted

      Thank you Nicola.  I agree, I think they know a lot less than they let on...I'm not sure if being 'different' than the ordinary cardiac cases is good (maybe generating more interest due to the "train wreck" mentality or whether its worse, humans are notoriously lazy and if something seems like hard work some people will simply defer or go the easy route because its too much work otherwise).

      I'm an analysit by nature and I obvioulsy have a vested interest in the information so I keep digging and meeting "real" people for me is better than the depressing medical journals.

  • linda39
    linda39 reneeb

    Posted

    Apologies, I have never come across this term before.

    Wishing you luck for the future

    • reneeb
      reneeb linda39

      Posted

      Thank you Linda, the term is not necessarily a classification, rather the only organ that shows any signs of sarcoid right now is my heart...thus "isolated cardiac".  As I understand only 13/100,000 sarcoids cases impact the heart at all, even less of these are isolated.  As mentioned below I suspect eventually test may show other areas (my eyes) which would mean its not quite as rare but for now its just the heart and its all I have to begin reaching out and researching.

      Thank you for popping in and saying hello and best of luck to you too.

    • linda39
      linda39 reneeb

      Posted

      I am awaiting an echo heart scan so this will be interesting after hearing about your diagnose 

      My eyes have deteriorated dramatically since having Sarcoid 

  • reneeb
    reneeb

    Posted

    I very much appreciate everyone coming here with information and support.

    I'm still waiting on more tests (lung tests, eyes, liver, kidneys, other?) but so far the only confirmed location is my heart.  The MRI of the heart showed the bottom half of my lungs are clear.

    I suspect they may find something with my eyes (which of course would then mean its not isolated to only my heart).  I had the corrective vision surgery 11 years ago and noticed some changes a few years back though my eye sight is still perfect.

    The only symptoms I've had are VT which is what brought me in to the hospital 2 weeks ago.  They initially thought it was a genetic cardiac disorder until the heart biopsy came back showing sarcoidosis.  Right now I know i have extensive granulolas on my right ventricle with the ventricle function at around 50% and the left ventricle has some damage but not as extensively.

    No other signs or symptoms so far and the literature on cardiac sarcoid is limited, even more so in situations where its isolated to the heart (most situations its identified post mortum so feeling pretty lucky despite being a bit overwhelmed with the news/info)

    Thank you all once again.

    • linda39
      linda39 reneeb

      Posted

      Well that is a lot to take in and not doubt a new issue to most of us
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