Sarcoid and the crazy aftermath

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 Hello I just joined this group and I was diagnosed eight years ago my problems are wide and varied at first I was affected with joints ,skin ,lungs and liver after that came major depression among other issues.  Since then I’ve had a few flareups and if anybody needs advice or help shoot me an email I am willing to lend adcice and what I have done to manage, well still trying to manage. This sucks I know 

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15 Replies

  • Posted

    Hi cris b,

    I have been diagnosed with sarcoid 2 months ago in my lungs. My right side hila is more inflammed. Major issue is heavy breathing and wheeze when exherting myself like shoveling snow. Where you diagnosed with the liver initially? did you feel anything around your liver area? I ask because I feel this annoying muscle pull on my right side, under my ribs and lower under pit area, when I move but maybe think my liver has been effected. Have not seen a specialist, waiting for my appointment. What medications are you taking and do you take any home remedies for inflammation? I heard turmeric is great! thanks again

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    • Posted

      That’s how I found out everyone is different. Myself I had the worst flu like symptoms of my life. Within two days 104 fever and shivers so bad I broke teeth. Next day I had symmetrical patches on my shins that I though someone had a lit match on them. It took almost dying and two weeks later with a byopsy on my shins to figure out what it was. Then with all the blood tests Ct scans Ext that’s when I got all the good news about everything else. When I have a flare up as the call it I wheese and cough also, cold weather is terrible, it’s hard to catch your breath. Over exerting yourself or stress can bring this on. It’s real hard for others to understand if you have any questions let me know 
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    • Posted

      Hey,  I did but I only have minimal scarring. So I only have issues when it’s really cold I’m lucky and have full lung functions. So with that issue I can’t really help. I know there are a lot of people out there that can.  Hang in there. 
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    • Posted

      did they perform a bioposy on your lungs tissue? they confirmed sarcodosis in my lungs however they want to take a bioposy. should I be scared or is this normal procedure? doctor said if it sarcodosis it would be stage 1.
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  • Posted

    Hi cris I was diagnosed in Feb still havin tests to find out more, 

    I feel so tired all the time and I get chest pains and getting breathless do u have the same symptoms? I have on my skin eyes and lungs got a lung function test on the 1st then hopefully see a physician, 

    Any advice will be welcome

    And if u wanna talk just message me yeh

    Thanks 

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    • Posted

      Missymaya. Sorry to hear but your not alone. The first four months I felt like a 90 year old man I could hardly get around exhausted all the time and yes the breathing was difficult. My skin looked like I All my joints rolled in poison oak.  Some days were better than others. They put me on 60mg of prednisone and in about 6 months I felt back to normal. But always be wary of what your body tells you. If I over exert myself I’ll start getting flu like symptoms followed by shivers. That’s when I know to dial it back and rest. I found this out the hard way when I over did it and relapsed and back on the meds. Find yourself a great general doctor that understands what’s going on. I went to a few before I found one that knows what’s up. That Doc can get you to the right   Pulmonologist  and all the other docs you might need. I hope that helps. Cris
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  • Posted

    Yes I do try and rest when I get home from work as im so exhausted I’m getting chest pains and my bones ache. Waiting to see physicians maybe after my lung function test I hope the waiting list is 44 weeks crazy en it? 

    My GP is useless just don’t know much about the disease so they don’t help me really.

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    • Posted

      44 weeks?  Wow that’s not right. I would do some reaserch  in your area to find someone that is knows or at least willing to learn about sarcoid. I’ve had a doctor try to give me Benadryl once he said it was allergies I just got up and left because he wouldn’t listen.  A great GP is the biggest hep you can have. 
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    • Posted

      Hi cris yes it’s 44 weeks waiting time to see physician, my gp is not good don’t do anythin really I joined them in November thinking to change again 

      I told them I’m getting chest pains and really breathless  but they said to wait to see physician,

      Thanks for your support guys 

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  • Posted

    Please do share!
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    • Posted

      I’m sorry that was meant for miss maya that has been waiting 44 weeks for a Dr.

      Mine and your stories sound very familiar, I was diagnosed in 2011 but my guess is I actually had it since 2004

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