1. Community
  2. Chest and lungs
  3. Sarcoidosis

Sarcoidosis what next

Posted , 4 users are following.

pauline76247
pauline76247

Hello, I have been very unwell for sometime now and have had numerous tests for different things including TB and  now Sarcoidosis. Reading what people are saying on here is very uplifiting.

When I went to see my consultant again a couple of weeks ago I still did not have a clue what was wrong with me. He then said ok lets go with Sarcoidosis, then you ask what is this and he comes back with Graulomas, small tumors on you body organs. Ok here goes I then ask is this a condition for life will it go away? He said that we will discuss this when you come back next time after putting me on six steriods a day, which I have been taking and have now put on 5 pound in wieght.

I am a very happy go lucky lady and will be 49 in May.

The posts that I have read in most cases have been positive.

It is now 3.54 in the morning and not for the first time I am waking up in the middle of the night for a couple of hours then getting up and going to work. Will the mortgage get paid if I don't go to work and would I be covered by critical illness. Such worring times.

I could go on but best stop.

 

0 likes, 5 replies

5 Replies

  • tangles
    tangles pauline76247

    Posted

    Hi Pauline

    Welcome to the global club of sarcoid members.

    We share our medical problems and do our best to prop each other up even though we are seperated by many miles and can only communicate via this web site.

    Sleep issues are a common problem with us and alot of us suffer from sleep apnia not sure if this is because we have sarcoid or just coincidence.

    Keeping talking to us all and we will do our best to help where we can.

    Again welcome

    Tanges

  • Nickademus
    Nickademus pauline76247

    Posted

    Dear Pauline

    Welcome to this site. First of all can I say we've been where you have been there, early hours of the morning, fretting, worrying, that I am doomed set of emotions. I was off work for 9 months, i also had other infections ot deal with. I have a mortgage to pay, on my own, no life insurance and just my salary. fortunately I get 6 months full pay six months half pay before there is no pay. I went back probably 6 months too early but the NHS doesnt pay the mortgage and I needed more structure in life. It was very hard and its got easier as ive learnt to manage it. I have a very supportive boss who too had a mild attack of Sarcoid a few years ago. So by hell or high water my mortgage got paid. Plus it gave me a focus to work towards and an aim to get up when i didnt want to, make the effort when i couldnt. Im not saying it was the right thing for the illness. In the first few months i couldnt get up or get things done but as time went on it made me focus myself. Not saying its easy, but its possible

    I am concerned by your consultant. Lets go with Sarcoidosis. Its not pick and mix, and optional extra. To diagnose Sarcoidosis you will need a biopsy. Its not usually in all your organs as a general rule tends to attack a specific area such as lymph nodes, or lungs, or skin etc. The bit the did concern me is that you said it is tumours on your organs. granumolas are not tumours as far as I know. In my laymans speak, im not a Doctor but tumours are usually associated with cancers both benign and malignant cancers. Sarcoidosis isnt cancer. As far as I know its when the white blood cells clump together.

    Ok so youve put 5llb in weight. I wish thats all I put on. It goes with the steroids. that is a side affect you have to endure Im afraid. Will it stay or go. In most cases it burns itself out after a few years in others its a conditions for life but is manageable

    If I were you I would want a defined diagnosis and talk to a medic who has a remote idea what they are on about. I would be alarmed that he says lets discuss it next time. If he is firmly diagnosising you there and then, he should be able to discuss the condition or point you in the right direction at the very least.

    I apologise to other readers if some of my points are accurate, im not medically trained. Just a s most of you learning as we go along with the condition

    I will say however, you get through it when youre informed. Its manageable, its hard work, but life goes on

    I hope things go well for you at your next consultation

    Kind regards

    Nicola

  • linda39
    linda39 pauline76247

    Posted

    Hi Pauline,

    It dont sound as though your GP is very confident.

    And using the term Sarcoidosis in a very flippant way!

    You mention various tests, but have you actually had any scans to determine the granulomas?

    As for mentioning tunors...well!!!

    I suggest when you next go back ask to see a different doctor as they may have a different attitude and hopefully a more positive one!!

    Good luck, Take care, dont be alarmed!!!

    • pauline76247
      pauline76247 linda39

      Posted

      Hi Linda,

      I have all sorts of test liver biopsy, lymph nodes removed, bowel, ct scan mri scan blood test after blood test they thought that i might even have TB at one point.

      i also get a dragging sensation down my right side and tonight to add insult to injury i feel like i have a huge lump in the middle of my rib cage. Uncomfortable but not painful.

      thank you for your kind words.

      pauline

    • linda39
      linda39 pauline76247

      Posted

      Hi Pauline

      So you have been through the mill then a bit like myself

      I was actually on TB medication for three months which in turn deteriorated my eyesight

      My main problem at the moment is my stiff ankles

      Maybe your GP should do a little more research and look at your test results

      Maybe

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.