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Breathing getting bad again

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valerie_26
valerie_26

I was diagnosed with sarcoidosis almost 3 years ago after extremely bad pains in my joints,swelling of my feet,very bad breathing problems and irritation of the eyes. They did a scan and confirmed that there was also scarring on my lungs as a result of it. I had multiple hospital checks and was informed that it is something that could just clear up by itself. I was given eyedrops for my eyes. And an inhaler for when I was short of breath. (Which I have to say was of no benefit at all to me). The symptoms did eventually clear up. But over the past week my breathing has gotten very bad. I could just be sitting doing nothing...and I feel like I've run a marathon. Completely breathless. Is this something I should go back to the doctor with? Or just let it clear up again...hopefully. Thanks.

0 likes, 11 replies

11 Replies

  • Katlis
    Katlis valerie_26

    Posted

    Hi Valery

    I've been struggling with breathing since June of this yr I was on prednisone wich didn't work for me I have all the same symptoms u have been through 8 different Dr and not one can help with the breathing part of this disease even seen one of the top respirologist in Ontario who gave me pills for my joint and when I asked if it would help my breathing he said no we have to figure that out at another time then I did bunch more blood work and was sent home. So sorry I'm rambling but long story short not much u can do I'm sitting here trying to catch my breath it's horrible I hope you can get better can then me good luck let me know!!!

    • valerie_26
      valerie_26 Katlis

      Posted

      I know. It's a horrible feeling not been able to catch your breath...especially as I'm only 35. My husband keeps telling to make a doctors appointment but I'm not sure if there's any point in paying €60 to be told there's nothing they can do. Over the past 3 years I've had an odd bad day with my breathing,but this has been more or less constant over the past week.

    • Katlis
      Katlis valerie_26

      Posted

      Well mine has been constant since July and no one's seems able to help msybe u should try the hospital it's pretty sad we can't get relief or help for this horrible disease wish u all the luck keep me posted if your on fb there is a great group on it with people who have Sarcoidosis u can join it's very helpful

    • valerie_26
      valerie_26 Katlis

      Posted

      I will indeed keep you updated if anything happens. Thanks.
  • polly79837
    polly79837 valerie_26

    Posted

    Hi Valerie,

    I would definitely go back to doctor and nip in the bud before it gets any worse. Was only diagnosed myself in March this year but got a bad chest infection a month and felt I was back to where I was before I was diagnosed. I went back to my consultant asap and was promptly treated. I recovered well and I'm feeling good presently. I put that down to listening to my body and seeing my doctor swiftly.

    Please go see your doc asap.

    Regards

    Polly.

    • valerie_26
      valerie_26 polly79837

      Posted

      Thanks Polly. Yeah I'm gonna make an appointment to see my doctor. Maybe they could even prescribe a different inhaler or something.

    • polly79837
      polly79837 valerie_26

      Posted

      My breathing was very bad and the only thing that helped was steroids. I know the side effects are a pain but they helped me so much. You may have to consider them. Hope you feel better soon. Let me know how you get on.

      Regards,

      Polly.

  • peter52775
    peter52775 valerie_26

    Posted

    Hi, Iv had this disease over 12 years now and been told that it would go away on it's own,, well it doesn't it's in my lungs, skin, sinuses and bowels, It's horrible. Go back to your doctor and tell them you want answers not fobbing off its obviously not going away, it's easily detected with a a.c.e serum blood test. If possible ask him to refer you to professor athol wells at the Royal Brompton hospital in London, they will tell you exactly how much you have it and what parts of your body is affected, their team is brilliant

    Hope you get some answers,

    Good luck,,, pete

    • valerie_26
      valerie_26 peter52775

      Posted

      Thanks for your advice Pete. Hopefully something will be done soon. There still seems to be very little known about it. I was diagnosed with it nearly 3 years ago. Then about 4 months ago my co-worker was also diagnosed with it too.
    • peter52775
      peter52775 valerie_26

      Posted

      Your right not many people know about it, It's like I said to my doc, most of what we know about it has been learned from autopsys and I don't want to be one of those

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