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I have been diagnosed with sarcoidosis since April This year and I’m still going to investigations

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nicole45350
nicole45350

Hi there I’m new to this group chat,

I’ve been diagnosed with sarcoidosis since April this year and I’ve had two biopsies on my lungs first doctors thought i had lung cancer but confirmed i had something called sarcoidosis and put on steriods 35mg.. Unfortunately the steroids did not work for me and had to go for another lung biopsy To see if I had TB or something eles, On top of the sarcoidosis this was done june 19 2019 and

I’ve been going for scans. I have not received any results from anything. Currently on no medication but in a lot of pain. I am just getting fed up Chasing up for my results I feel like I’ve been forgotten about and I’m just in constant pain I feel like I’m on my own But luckily for me I found this website, i feel like I am not on my own now.

0 likes, 12 replies

12 Replies

  • m_m_h
    m_m_h nicole45350

    Posted

    Hi Nicole

    Sorry to hear about your diagnosis. Some people have a single flare and are never bothered again.

    Sadly though I think you are at the start of a long road where you may wait a long time for appointments with many different specialists, whose knowledge of sarcoidosis is limited.

    if you are one of those who have many flares, read everything you can about sarcoidosis and join groups. Try Sarcoidosis UK at www.sarcoidosisuk.org

    Loads of good info on there and they have local groups around the UK.

    Good luck!

    mairie

    • nicole45350
      nicole45350 m_m_h

      Posted

      Hi Mairie,

      Thank you ever so much for your concern and getting back to me, I have read up about it on sarcoidosis UK website and I do understand that it’s a long process but it’s just heart wrenching when you’re waiting and waiting and no answers.

      thank you.

      Nicole

  • faz04177
    faz04177 nicole45350

    Posted

    hi i am sorry to hear of your situation ,

    i feel like i am having a de ja vue as that is exactly where i was a few years ago

    are your kidneys ok? and how about the liver ?

    push your doctor to see if he can give you hydroxicholrequinn 30 days course as i strongly feel this is a parasitic issue i took the same medication and it did wonders for me. PLEASE let me know how you get on as i went through this for 4 years and feel great now however i also took some homeopathic medication with superb results prescribed to me by a homeopath who i can only say is a remarkable man

    regards

    Farhan

    • nicole45350
      nicole45350 faz04177

      Posted

      Hi Farhan,

      I am pleased to hear that you’re doing well. I only have sarcoidosis on my lungs lymph node. I am not sure if I have kidney sarcoidosis but I dont have liver.

      When you had it 4 years ago wasl you always sleeping because I am always sleeping?

      I will discuss with my consultant once when i see him. Regarding the medication you have mentioned. thank you

      Nicole

    • faz04177
      faz04177 nicole45350

      Posted

      HI Nicole

      I am pleased in the sense that you ONLY have a lung issue

      yes you do feel tired and lathargic, i went easy on the steroids as they give u a high and unless you continue with them on a high dose u will feel more tired . on the other hand keep a steady excercise routine and plenty of relaxed walking .

      look also at introducing a morning and evening dose of herbal teas like nettle and basil and thyme they have very positive and powerful effect on the lungs and other organs .

      please let me have your feedback

      wishing you well

      Farhan

    • faz04177
      faz04177

      Posted

      hi

      this is the email that i found when i came across an ex patiant who wrote what is self explanitory

      Hi,

      I was diagnosed with sarcoidosis about two months ago. I had lower leg plaques, a cough ( for years), symptoms of IBS, chest pains, pains between my shoulder blades, extreme tiredness. My rheumatologist put me on Hydroxychlor 200 mg 2 times per day. No steroids as I won’t take them. My doctor says this medication will keep new granulomas from forming in lungs, heart,

      everywhere. All the above symptoms have receded and or gone completely away. The IBS bloating, pain and other symptoms of IBS are gone. Tiredness and general ” not feeling well”, gone. Leg plaques are starting to go away. Cough, gone. If you are only taking steroids know they will not cure anything. Ask your doctor about this medication. It does not “cure sarcoidosis” but keeps new granulomas from forming. Stops the disease in it’s tracks and seems to make the problems go away. Good luck.

    • john23984
      john23984 faz04177

      Posted

      I was told the prednisolone was to reduce scarring in its action as anti-inflammatory. Absolutely no mention about preventing granuloma formation.

      I'm curious about the supposed mechanism involved there.

      A granuloma as I understand it is the name for a clump of cells clustered around some pathogen/virus/bacterium that it has killed or tried to. The problem with auto-immune illnesses being that in the centre there is nothing identifiable as cause of this reaction. Happy to be corrected by someone medical/research based.

  • tyagi
    tyagi nicole45350

    Posted

    Hi Nicole.

    I agree with Mairie. It can be very frustrating to find the right doctor. Fortunately I now have a very good lung specialist who used steroid treatment to push me into remission. He is also happy to refer me to other doctors e.g. for skin symptoms. Don't despair, but do keep going, to get info & treatment.

    And the UK Sarcoidosis site is very helpful. Good luck !

  • donn54320
    donn54320 nicole45350

    Posted

    ..Johns Hopkins Hospital in Baltimore has an excellent facility dedicated to Sarcoidosis ..took us a good while to find it ..has been very beneficial

  • paul73780
    paul73780 nicole45350

    Posted

    sorrey to hear about your bad news,over eleven years ago i eventually got a diagnosis after about 4 months of differant things happening.Still being treated now

  • john23984
    john23984 nicole45350

    Posted

    I had no pain.

    Lung scarring of ~5%.

    I'm in UK and was treated by a lung clinic with regular chest Xrays and breathing tests.

    Discharged now.

    All the best.

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