sarcoidosis

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7 Replies

  • Hi - not sure what your question is but happy to try and help/answer it.
    Marie x
  • I have only just been diagnosed, but happy to help !!

    Best Wishes

    R
  • No question on here but my husband has had sarcoidosis for 21 years. I am his carer so happy to help in any way I can. Ask away.
    Good wishes, sassy59. xx
  • Wow 21 years has made me open my eyes wide even though it is early in the morning and I'm unable to sleep.
    I have just been diagnosed with Sarcoidosis... How has your husband been over the past 21 years with this condition?
    Newby to this site and in need of so much info/questions answered x
  • Hi AmethystAngel, Pete has done pretty well so far with the sarcoidosis but it is one of those diseases that just keeps on giving. It is not really active now but he does have it in his lungs, airways, joints, nervous system and heart. Even with all of that, he lives life to the full so far as he is capable and has a very good attitude to life and living. The one thing that has almost defeated him really is his back problem. He has a prolapsed/herniated disc which caused terrible pain so he had a spinal cord stimulator fitted. This has not been working as well as we hoped so will return to the Hospital soon to have it looked at. Not sure if it is just re-programming or something has moved.
    Sarcoid is something that can just burn itself out or can stay with you for years but with proper medication, good care and trying to help yourself too you can live a really good life on the whole.
    Do stay in touch. Wishing you well. xxxx
  • Hi Sassy59,
    Wow it sounds as though Pete has really been through it.
    As I mentioned earlier I have just been diagnosed... Stage 2 lymph glands and lungs along with Erethyma Nodosum on legs (lumps and bumps with rash) and aching joints. I tought the breathlessness was down to being overweight so it was only when I started getting lumps on my legs that I mentioned anything to my GP. I'm on the sick from work which is putting me in a very precarious position in relation to I could lose my job (long story - sickness history) and I want to go to work but unable to with the state of my breathing.
    The consultant and my own GP have both said it can end as quick as it began but any info I have found, gleaned from others points towards this condition being around for a while; so I'm trying to get my head around it being my new best friend
    I would not have thought that it could be so debilitating!
    The fact that there is this site is helping immensely and I'm certainly going to pass info on to my GP practice for any other patients who have sarcoidosis.
    I wish Pete well with his spinal cord stimulator and hope it gets sorted soon.
    Would love to keep in touch.
    Take care of yourself x

    Catherine
  • Hi Catherine, being diagnosed with something you know nothing about can be very daunting. When Pete was diagnosed we did not have a computer and had to rely on the library for info. Glad all that has changed now and I am sure you can get leaflets on sarc from hospitals and even maybe BLF. Please try not to over think it as it can and does affect people in different ways. Pete also has the large, itchy bumps on his shins and they drive him crazy. He has special cream to use but not sure if it helps or not. As your GP says, it can go as quickly as it came but that does not always happen.
    You can maybe do some exercises and generally try and keep as fit as you can. See if certain foods trigger or help anything. Lots of things can be done and lots more is known about sarcoidosis nowadays which is good.
    I am sure Pete will be ok with his SCS eventually but it is still early days. Thanks for your kind wishes.
    Hear from you again anytime.
    Take care, Carole xxxx

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