Sarcoidosis diagnosis

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Hi I have had a chesty cough and shortness of breath for a while now. After a chest xray showed enlarged lymph nodes, I was sent for a ct scan and I have just been diagnosed with Sarcoidosis. Could anybody shed any light on how serious this is or can be? My doctor wants to send me to a specialist to extract a biopsy from one of the lymph nodes but he's quite negative at times so I'm not sure how bad this can be if it's bad at all?

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  • Posted

    Hi Brahmabull16,

    I'm sorry to hear what you're going through, I know this can be a scary process.

    Biopsy is one of the best / only ways of diagnosing Sarc, so the biopsy is probably a good idea.

    As to how serious Sarc can be.... well it's a bit like 'how long is a piece of string?'....

    Some people have a type of Sarc that has minimal symptoms, needs very little treatment and which spontaneously enters remission after 2 or 3 years. For others it is fatal. For me, it was quite serious and I required a fairly long treatment of the steroid, Prednisone. The doctors thought it was unlikely that I would get better (they thought it was more likely to be a case of 'managing' the disease's progression & symptoms) but I went into remission after 5 or 6 years & ive been ok since then.

    I'm sorry that there isn't a reliable way to predict your course. However, if you can, please try'n hold on to the idea that it is as likely to turn out ok eventually, as not.

    Cut yourself some slack during this process, as the disease can be chronic and the being sick part can, of course, be awful.

    Best of luck to you x

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    • Posted

      Hi thank you for your reply.

      Sorry you had to go through that, must have been awful but I am glad you are better now. Yes that's basically what I read online, that there's no way of telling how serious it is going to be. Aparantly for some people it goes after a few months or a few years.

      When they take the biopsy is that just to confirm that it is sarcoidosis or can they tell how serious it is etc? To be honest I am not overly worried as my main concern after having a ct scan was that it was cancer, which I am over the moon it isn't (obviously) and touch wood at the moment my symptoms aren't very serious. I have a very physical job in gardening which I can do with no problem despite shortness of breath now and again, and the cough I have comes and goes, some days I'll have a bit of a coughing fit, some days I don't cough at all. Although I do realise my symptoms could get worse over time.

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    • Posted

      Hi there, I am at a similar stage to you, they are almost sure have sarcoidosis but want to do biopsies to be sure, it is scary, I had never heard of it and have Googled it to death, I am sure we will be fine, keep positive! Let me know how you get on!
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    • Posted

      Hi Gail,

      Yes I am the same, Googled it to death constantly looking for the worse possible outcome just to be prepared, not like you can be prepared but you know what I mean. I'm sure it's nothing and will go away after a few months or so. I am drinking plenty of water, changing my diet to a lot healthier lifestyle and even drinking fruit and green teas. They are really good for you, probably not for the condition we have, but anything that's good for the body certainly won't go a miss.

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    • Posted

      As far as I know, the biopsy can only tell the doctors that you have Sarc, not provide any info about the severity.

      You, and 2gail24648, both seem to be trying to stay positive; I really hope that everything works out for both of you.

      I think Googling can be intimidating, but it can also help you to ask doctors smart questions and advocate for your own health. So your researching may come in handy.

      Once I became quite sick & began the steroids I took a holistic approach and changed my diet, took up yoga, painting and psychotherapy. I tried to reduce stress as much as possible. I am not saying these things cured me (I was also taking strong medication) but they may have contributed, and they can't hurt....

      Best of luck to both of you x

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    • Posted

      Hi Gail, their will be nothing to worry about. As far as I know they only put a needle into your chest into one of the lymph nodes to extract a biopsy which confirms the condition is sarcoidosis. I have read up on the condition a lot and I haven't once found anyone that's had really bad problems. We are going to be fine don't worrysmile

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    • Posted

      Hi brahmabull16, they said it's a bronchoscopy first through nose and down throat to check lungs and then through mouth to do lymph gland biopsies, have had ct scan, blood tests and lung function test, do you think it could be anything else? Sorry to be a pain but it's good to speak to someone who understands!

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    • Posted

      Ahh ok, fortunately I don't think I'm having the bronchoscopy as I hate stuff through the nose. Honestly I have no idea as I'm not a doctor and know absolutely nothing lol, but I'm sure their will be nothing to worry about. It is a little scary but my doctor said it's not life threatening. Did your blood test show anything? I had blood tests too but they all came back fine. My ct scan did show I had more enlarged lymph nodes than he originally thought. Do you get the odd stabbing pain in your chest? Or does your chest feel very hot at times?

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    • Posted

      Hi brahmabull16, thanks for replying, my bloods came back ok, and yes I get odd stabbing pains in the chest sometimes, not sure about it feeling hot, have felt like sweating sometimes through the night? Think will be having biopsies soon so hopefully will know more then, just don't want this! Thanks for being so supportive! 😀

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    • Posted

      Yes mine came back ok too which was very refreshing. I don't get the sweats but sometimes my chest feels very hot, which I think both are symptoms of sarcoidosis. I don't think anybody wants this love but I would certainly rather have this than cancer, which my doctor was worried about it might be. If it's any concellation, I have a customer (I'm a self employed gardener) who is lovely and is always asking how I am. I spoke to her last night and she said 2 of her friends had sarcoidosis and now their absolutely fine. One of them still gets a dry cough now and again but the other is completely free of it. She made me feel so much better just by saying this.

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    • Posted

      Your not a pain at all, I have more questions than answers too unfortunately. Aparantly steroids is one of the treatments, the dose depends on how bad the sarcoidosis is. One of her friends got a lump on her head, have you got anything like that? I'm starting to feel a bit of a bruise on the left side of my head and feels very tender. I could be getting a lump which is another symptom of sarcoidosis

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    • Posted

      Hi, no haven't got any lumps yet! I think we might get a bit paranoid and put everything down to sarcoidosis now! I have so many questions I wish we didn't have Google sometimes, I don't know anyone with this so it's good to speak to you who understands 😀

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    • Posted

      Haha yes that's a good point, any pain or itch I have now I think it's to do with that lol. Try and forget about it and just go on with daily life. I know it's hard but try to keep yourself busy than sticking at home doing nothing or googling. As a Gardener I'm quiet through the winter so stuck at home it's been on my mind a lot. I had 2 full days this week just gone and I think it did me the world of good getting out, working and socialising etc. It took my mind off things completely. I'm also drinking 5-6 pints of water a day now when I probably had half a pint of day before, which I don't know if it's coincidence or not but I feel better just for that and eating healthier too.

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    • Posted

      Yes I agree with you about keeping busy, I too am self employed working for a finance company, I am out on the road most of the time and it definitely helps keep my mind off this!I will start drinking more water, like you I haven't really been drinking more than a glass a day, in fact probably have more wine than water, ! Going to try and be healthier, it can't do any harm, keep in touch will let you know when having biopsies 😀😭

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    • Posted

      Hi Gail, sorry I didn't reply sooner, I haven't been getting any emails regarding your replys.

      As it happens it wasn't actually my biopsy, the woman on the phone made it sound like it was for the biopsy but it was just an appointment to tell me how things are, go over possible treatments and to book a bronchoscopy which I go for a week on Thursday. The doctor at the hospital showed me my chest xray, and the positive news is she said if it stays as it is I won't need any treatment and it will just go away by itself. She thinks it's a mild case or sarcoidosis but the bronchoscopy will confirm that. My chest has been pretty good, I haven't coughed much for a while now or felt pains in my chest and my breathing seems to be better so I'm hoping it may be healing itself, fingers crossed. How are you doing? Have you heard much from the doctor?

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    • Posted

      Hi was getting worried about you! Glad you are ok, got bronchoscopy appointment on Wednesday, very nervous. Like you am feeling OK, been drinking more water and went for a long walk today by the sea and feel fine, that sounds good what Dr said about your xray, I so hope we will both be ok let you know how Wednesday goes!
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    • Posted

      That's kind of you bless ya. Sorry for worrying you. I'm sure we will both be fine, 9 times out of 10 sarcoidosis is treatable, or it just goes away by itself. Hope Wednesday goes ok for you, let me know how you get on. Take care of yourself.

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    • Posted

      Hi there, well have survived today, was so scared, asked for as much sedation as possible, weird feeling was awake but not bothered, didn't hurt. Glad it's done, don't know when get results, you don't need to worry about it! Hope you are ok! 😀

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    • Posted

      Hi Gail, thank you for the update. Was it a bronchoscopy you had? What was it like with the tube going down your throat? That's the thing I'm worried about the most. I'm terrible when doctors put that wooden thing in your mouth to check the back of your throat, always makes me gip lol. Hope your ok, are you feeling ok after the local anaesthetic? Apparently your not supposed to work for 24 hours after but I'm hoping I can go to work the next day after I have mine done.

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    • Posted

      Yes, they put this gel up your nose and spray back of throat, then start sedation if want it, can't feel camera going down so don't worry, I was so scared, they took biopsies of lungs and lymph gland, didn't feel a thing, weird watching it, like watching it happen to someone else, felt fine after, had coffee and biscuits and that was it, all that worry, you will be fine, am working tomorrow, just got a bit of a sore throat, staff were all lovely, just got to see what results are!

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    • Posted

      Hi Gail, just wondering how you are doing and if you've got your results back yet? I've got my bronchoscopy tomorrow morning. I'm looking forward to it in a way just so I can get all this over and done with and find out if I need treatment or not and where to go from their.

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    • Posted

      Hi, no results yet, hoping no news is good news! Have been bit achy this week wondering if it is to do with this? Let me know how tomorrow goes, you will be fine! 😀 how have you been?

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    • Posted

      No news is always good news Gail, but I'm surprised you haven't got your results yet. As for been achy, I think that's a symptom of sarcoidosis if I remember rightly. Hope you are ok, I have actually been fine, I'm back to work gardening now 10 hours a day, I've hardly been coughing, haven't needed my inhaler for a couple weeks now. I've felt a bit shortness of breath these past couple days but I think it's a psychological thing knowing I'm having the procedure today.

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    • Posted

      Hi Gail, I've had it done. It wasn't too bad really, the worst thing was I couldn't stop coughing and choking with the anaesthetic and the tube down your throat. But apart from that everything went fine. The nurses were lovely, I couldn't wait for a brew though once I'd got to the recovery room smile Please let me know how you get on with your results etc. I'll find mine out 2 weeks today.

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    • Posted

      Hi, how are you doing? Still no results, rang yesterday and they didn't seem to know anything! I feel okay at the moment just getting on with everything! Will let you know when I hear anything, why do you think it's taking so long? Gail

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