Lymph nodes in chest, clear x ray?

Posted , 6 users are following.

Hi, just wondered if anyone else has been diagnosed with sarcoidosis which did not show up on an x ray? I've been ill since May, but it was a mystery until I had a ct scan which shows several enlarged lymph nodes around my heart and behind my lungs, I'm booked in for a camera biopsy but just wondered if anyone has this ie. the lungs seem to be clear? Thanks x

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  • Posted

    Hi Shazarr,

    Yes I was diagnosed with Sarcoidosis after biopsy. I have several enlarged lymph nodes near my esophagus which showed on CT scan but not x-ray. I have been unwell since last October but as yet have not been offered any treatment for sarcoid - it seems Doctors are hoping they will disappear on their own and I have a follow-up appointment for December.

    Regards,

    Lynne

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  • Posted

    Thanks Lynne yes I'm hoping (selfishly) that I have the type which can go on it's own, but I still find it hard to understand how it can be so debilitating, although I think I now understand how the condition works. Hope you have good news in December x 
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  • Posted

    Hi Shazarr

    I was also diagnosed with sarcoidosis after nothing showing up on a chest x-ray. All the blood tests etc were suggesting it as a possibility but the x-ray was pretty inconclusive. So I got a CT scan followed by a needle biopsy of some of the affected lymph nodes only which only took about 10 min, including waiting for the local anaesthetic to work.

    I've had treatment with steroids, which has now been stopped and so far so good. Everything seems normal and hopefully all that will be required in the near future is regular blood tests.

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  • Posted

    My diagnosis came after a lump was taken from my arm and was told I had the skin version of sarcoid also rash on shins but after treatment with medication it went away but I always have flair ups and was told it will never clear up fully as once you have it you have it.........steroids help the inflamation side.
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    • Posted

      Hi Squarky ~

      I was dx'd with skin sarcoid a few months ago but lately I'm feeling a burning feeling on both arms and into the fingers.  I've checked my skin and initally I had some raised skin lesions...but now they are larger and flat and shiney...and this burning feeling I cannot do anything about.  I go and see the cardio dr tomorrow w/hopes he'll have a medical plan with the other doctors...I'd rather they work in the same hospital so they can keep up with my case a bit easier. 

      What I wanted to know, when you say a "rash" on your shins, is that rash flat or raised and is it a bright pink in color or flat and milky looking (white) and, do they burn?

      I'm sorry for anyone dealing with this disease.  It just has a "field" day on some.

      Warm regards,

      Frustrated

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    • Posted

      Hi frustrated61.......I have raised like what I would call skin tags but flat on the back of my hands and all my doc said was there weird?....rash on both my shins is a reddy/pinky colour and every so often feel hot or can itch like mad, it never goes away from my shins and I also find there is lumps/bumps under the area which can be sore if you press on them, another symptom of the skin version is that the "black" in tattoos swell up ..........was told this in 

      hospital.....they actually took photos of this for there records....also have Dry Eye because of it aswell but use eye drops!

      hope u sorted soon😊

       

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    • Posted

      Thank you Squarky.  I hope you get some relief as well.  Are you going on steroids?  Not sure what I've decided about steroids thus far.  I'm going in to see the Cardio doctor with a positive attitude and w/any luck, it's not going to be a bad appt. 

      It's odd you said that about a tattoo you have.  I just designed one for my wrist area to support both sjogren's and sarcoidosis...the design part was the bracelet look surrounding the ribbon...so, since I haven't gone out to get mine, yet, what do you think about it...would you still go and get one knowing what they told you while your hospital stint?

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    • Posted

      I have spells on prednisolone which are great for inflamation waiting on an appointment in feb15 to get my immune system checked out......as tattoo goes get it done as the black only raises up every now and then but doesn't harm it.....but when they were checking me over they took a small slither of my tattoo skin to check it.......goodluck!
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  • Posted

    Hi Shazarr ~

    I have sarcoid as well.  Originally I had an xray and it showed like I had pneumonia.  Because of the other health issues I had/have, my GP sent me to get a CT scan that very day.  The results looked as though I had lymphoma or sarcoidosis.  I then had a biopsy of the lungs and lymph nodes and the tissue showed granulomas in the lower lobe of each lung.  Recently, I had a meylogram for an unrelated problem but it shows that the sarcoid is now in the middle region of the lungs plus it showed cardio sarcoid.  I have an appt for tomorrow 25th with a cardio specialist.  I was also give a dx a few months ago by a Dermatologist and I also have it on the skin and scalp.  It's starting to get out of hand right now and I'm guessing it's bc I'm a bit stressed with the dx of cardio sarcoid.  And, the lymph nodes are enlarged and I'm having pain in one area of the chest...I believe the nodes are a bit inflammed.

    Sometimes it does go away as quickly as it came.  It's different for everyone that's why it's hard to study this disease because very few have it for long term. 

    I'm sorry you are feeling a bit anxious.  When do you have that biopsy?

    Please keep us posted on how you're feeling.

    Warm regards,

    Frustrated

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    • Posted

      Gosh that's an awful lot to take in, poor you, booked in on sat the 4th for biopsy but down on cancellation list for this Saturday so not long, I'd been feeling so much better these last few weeks but I've slept nearly all today and feel like I'm back at square 1! I have lots of nervous system issues but they've been quiter too. I saw a neuro and had a brain scan (for signs of MS) but it was clear so it was put down as a bit of a mystery virus. I know sarcoid can affect that part too but I'll wait to see how the biopsy goes till I take that any further. Good luck tomorrow with the cardio, really hope you have some good news, it sounds like you're due some. X
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    • Posted

      I guess we're all give what we can handle,right?  I hope you get in on a cancellation  so you get some solace instead of having to think about it.  Are your nervous system issues from the sarcoid ?  I have nerve issues but it was caused by an auto accident.

      I also have sjogrens disease another autoimmune issue. 

      I guess what I want to say in a nutshell is get as much sleep as you can allow your body.  My problem is I cannot sleep.  I get steroid injections and they tend to keep me up for 3 days or so. The immune system cannot become healthy if sleep deprivation is an issue.

      I wish you well and hope you get your answers sooner rather than later.

      Best regards,

      Frustrated

       

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