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Awaiting a referral

Posted , 6 users are following.

Shazarr
Shazarr

Hello, I'm new to all this so I'm afraid I can't offer any advise as yet but it's fascinating to read about this illness from others who have it. I have been very poorly since May, I was very lucky that I have great Doctors who have done every test under the sun, but until last week came up with normal findings. I've had the usual x rays and blood tests, we have been down the route of possible MS (long story but I have eye problems, numb patches breathlessness and hypersensitivity) but my brain scan was clear. We were at the point of considering ME or Fibromyalgia or something similar. Anyway I have complained that my veins are enlarged on the left side of my neck and I do get breathless very easily, but after 2 separate consultants (acute medicine and neurologist) had examined my neck they convinced me it was normal! After seeing recent photos Of myself I decided it is definitely not normal for me so my lovely GP referred me for a ct chest scan to ensure that I didn't have a rare tumour or something similar that doesn't show up on x rays. Last Thursday he called me in the evening(always a worry lol when doc calls you out of hours) to say that the scan had shown several sarcoids behind my heart and lungs, he said the largest of which is 3.2cms by 2.1cm, I think that's what he said but I was in shock at the time! I have an appointment with him  to discuss more, and he is referring me to a specialist. I think I was wanting to ask if anyone else has had the problem with their veins? I do not and have not had a cough so I am also wondering if my sarcoidosis is not in my lungs and is somewhere else? Thanks in advance for any feedback x 

0 likes, 10 replies

10 Replies

  • morag7
    morag7 Shazarr

    Posted

    Hi there

    Its quite possible that you have sarcoidosis somewhere other than the lungs. Lungs tend to be the most common site but I don't have it there. Lymph nodes and kidneys in my case, which is unusual. If you get some breathlessness that could mean there's a touch of it affecting your lungs, or if there's a granuloma behind your heart it could be affecting how well it can pump blood around your body. That would probably tie in with your veins being enlarged too, they're explanding to help the blood flow better. 

    The main thing is that you now have a diagnosis and a supportive GP. So hopefully it won't be too long till you get some suggestions of things that might help and will get a chance to ask any questions you want. The thing my GP suggested for getting information was the info on sarcoidosis in the medical conditions on this site - gives a good, clear basic description of the condition and how it can affect people. 

    Morag xx

  • lynne90477
    lynne90477 Shazarr

    Posted

    Hi Shazarr,

    I have never had a cough.  The enlarged lymph nodes I have are near my oesophagus. A biopsy diagnosed sarcoidosis but as yet I have had no treatment.

    Regards,

    Lynne

  • rachael88657
    rachael88657 Shazarr

    Posted

    My sarcoid affects lymph nodes in my chest, no cough but ongoing sinus problems and when it's really bad it affects my joints particularly knees feet and wrists. Am waiting to see ENT again but it's all an ongoing condition for me. Have to learn to read your body and the warning signs. We can all sympathise!
  • tangles
    tangles Shazarr

    Posted

    Hi Shazarr

    Sarcoid usually effect one or more organs.

    Usually effects the chest/lungs thus you are sent to a respiratory specialist. 

    Which is great. However they tend to only treat respiratory issues and not search for other organs that are effect etc.

    In my case I have an enlarged spleen and joint inflamation aswell.

    There may well be other issues that I am unaware of at present.

    I have throat discomfort so I am going to revise this with the GPs soon.

    I am still learning about sarcoid after having it for over 30 years.

    This site which I only recently found has been great for me as this is the first time in 30 years I have had others to talk to.

    Good luck

    Phil...Tangles

    • magdafloasiu
      magdafloasiu tangles

      Posted

      Hi Phil, I wanted to ask you about the throat discomfort you have. I have the same thing, only that it manifests only in the morning. When I wake up, my throat hurts, just like I'm with cold. Do you have the same issue or something else?

      Thank you!

    • Shazarr
      Shazarr magdafloasiu

      Posted

      Hi I'm new to all this but last year I went to the docs as I have a sore throat every morning, she was most unsympathetic, told me they looked fine and said I'd never get them taken out on the NHS as they just don't do that now! I've also had eye problems and I'm quite deaf which my family and friends tease me about, guess it's nice to finally find out there may be real reasons for all these things and I'm not just going nuts!!! 
    • tangles
      tangles magdafloasiu

      Posted

      Hi Magda

      Yes sounds similar. I am also having some swallowing issues. The other day I was talking on the phone and sucking on a sweet and the same time. My body got the wrong message and blocked off my breathing. I nearly choked to death whilst my brother was on the other end of the phone. He kept saying do you want me to ring an ambulance? I was so chocked I could not say yes. After a while I started breathing again. I will discuss this with my GP.

      I also have sleep apnea (not related to sarcoid I think) before this attack I asked the specialist to look in my throat. He could not see any problems.  I will see what my GP has to say now that I have had this unusual attack.

      Phil…Tangles

    • magdafloasiu
      magdafloasiu tangles

      Posted

      Thank you for your response, Phil. Yes, it seems that it's pretty much the same issue. I'll also talk to my doc but, since I'm already on corticosteroids, I don't think there is something else I can do about it.

      Thanks!

  • Shazarr
    Shazarr

    Posted

    Thank you so much for all your replies, I had a phone call today to have tests and see a consultant on Friday (super quick!!) so will hopefully know a bit more then, this site seems amazing as hardly anyone I know has heard of sarcoidosis! Mind you we are in rural  Norfolk! One quick note, i was in a swimming pool this morning (spa treat with friends) and I couldn't stay in as my chest felt very tight... I stress that I was just wallowing and no physical effort was involved lol far too tired for that... But it felt like a pressure? Lots to learn and find out I guess. Thanks again everyone x x
    • magdafloasiu
      magdafloasiu Shazarr

      Posted

      That sensation in your chest could have been from chlorine. They usually put chlorine in swimming pools to treat the water against bacteria. The best pools for people with pulmonary problems are the open-air pools, or even better, lakes and seas -- I know as it also happened to me in the past. even in an open-air pool, I have the same chest tightness, but not that intense.

      My doc told me not to go to the pool because breathing in that air with chlorine vapors will lead to further inflammation inside lungs and upper respiratory tract. After all, chlorine is a very strong chemical, which can cause problems even to healthy people. So, stay away from it. smile

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