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Sarcoidosis?

Posted , 4 users are following.

carol40334
carol40334

I have been ill for 8 years, lung granuloma's, coughing, brain lesions from seizures and sensitivity to vitamin D and sun (had stroke symptoms twice following holiday and mega dose of vitmain D due to deficiency), early arthritis, passing calcium in urine but blood OK, severe nerve problems and skin scarring wherever the sun shines. Had a liver problem thought to be fatty liver but not confirmed. Feel out of it during the summer.  I am 54. GP doesn't know where to refer me to. Could it be sarcoidosis and who is the best doctor to start with please. Can't work due to problems and muscle weakness. Don't know where to turn?   

0 likes, 5 replies

5 Replies

  • tangles
    tangles carol40334

    Posted

    Hi Carol

    No where near enough info to say if it is sarcoid.

    Liver problem...is it enlarged?...this is a typical sarcoid issue.

    Early arthritis...granuloma in joints, which is typical of sarcoid...will and dose cause joint pains...had them for thirty years.

    Low calcium also typical of sarcoid.

    Muscle weakness...fatigue is also common.

    UV issues...my eyes suffer from the sun also got roseacia skin complaint, nor sure if this is related to sarcoid.

    Some interesting comparisons.

    First get a chest Xray to see if there are any shadows or irregularities.

    Second referral to chest specialist...insist that the specialist gives you a full lung function test...insist on a copy of the results when they are available...also copies sent to your GP.

    Third you will need a biopsy either bone marrow or lung.

    Fourth a brondascope procedure where they look down your lungs with a cord with a camera on the end...insist that a specimen be taken during this procedure. Otherwise they will order a second procedure to recover a specimen. Why suffer the same procedure twice when only one was needed.

    Should give you and your "GP" something to talk about.

    Regards

    ​Tangles

    • carol40334
      carol40334 tangles

      Posted

      Thank you Tangles, I have lung granulomas on chest xray but they are calcified so doctors haven't bothered to find out what they are, it is not TB, I will push to get more tests done thanks. Also have bone problems, early osteoporosis, nerve problems including motor nerves and tremors. Advice appreciated, regards, Carol  
  • terry39293
    terry39293 carol40334

    Posted

    Dr endean. Rheumatology at Truro Cornwall sorted me out. I didn't have all those symptoms mind you.
  • tangles
    tangles carol40334

    Posted

    Hi Carol

    I would prefer you talk to your doctor first about the items on my first post before giving more free advise.

    It would be interesting to see what he has to say, when you give him all of these new directions.

    Regards

    Tangles

  • Nana_Deborah
    Nana_Deborah carol40334

    Posted

    Hi Carrol,

    I have been not feeling good for some time. I have had fatty live, parathyroidism with ananoma, restles leg syndrome, so tired I have trouble driving any distance and last Febuary I started coughing. I was going to emergency every other night with breathing problems. I was treated for pluracy, flue, asma, than the doctors suggested maybe I should see a mental specialist. I finally had a doctor pick up on my swollen lymph nodes and was sent for a CT scan. Results came back lymphoma or possible sarcoidosis. After a biopsi I was diagnosed with pulmanary sarcoidosis. What I have found out there is not much information out there. Symtoms vary from person to person, I have yet to hear about two cases the same. I would love to hear from some one who has heard different. I do not have it as bad as most people so I really feel sorry for those still seeking some answers. There is help out there Carol and I hope you find it and the doctor that will actually exam you and have some knowledge of Sarcoidosis. Only my Pulmany Specialist has any answers and those are vary limited. 

    Wishing you answers soon,

    Deb

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