10 years of sar

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Its been just over 10 years since odd things started happening to me,first was a swollen face,followed by brown marks on mainly my legs,then a cough that never went.Went to the doc's several times he had no clue,had the impression i was wasting his time.Fast forward to about June and i am now feeling very rough,not breathing well,food tastes crap,constant cough.Was somtimes seeing spots in my eyes,so went for a eye test,where she found a bleed at the back of one eye,referred to eye a Hospital for further tests,at the same time i went back to the doc's but asked to see the practice nurse,she checked my weight and listened to my chest,then referred for a xray.Attended eye hospital,while being examined the guy said can you wait there i would like a second opinion,second guy had a look next thing i know im sitting in a wheel chair being admitted to hospital.Numerous tests during the next 10 days and i get a answer to all these months of suffering

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10 Replies

  • Posted

    Did they diagnose sarcoidosis in your eyes? What symptoms do u have if u don’t mind me asking? I’m going to the hospital on Monday to get my eyes checked so I’ll find out

    kind regards

    Maya

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    • Posted

      I don't think they diagnosed sar just by the eye test,but something made them admit me,had loads of tests while i was in,mri scan blood tests ultrasound,skin boispy's,other stuff that i can't remember at the mo.Don't really have any obvious symptons now,still taking drugs to keep well,and i go back to the hospital for blood tests,lung function,and a review with the doc

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    • Posted

      I have intermediate uveitis. Symptoms are floaters, flashes, mild ache and blurry vision but not much else.

      If you have anterior uveitis, you will have red eyes and pain.

      I am an optician and can answer questions you have if you need!

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  • Posted

    Hi Paul.

    My story is very similar to yours. I have had various odd symptoms for 10 years which have made me feel like a hypochondriac.

    One of the symptoms has been intermediate uveitis.

    I had a flare 6 months ago and following an accident around the same time I had trays and Ct scans which showed lung abnormalities and enlarged medicinal lymph nodes. I also saw a new ophthalmologist who took one look and said 'This is sarcoidosis

    I am now waiting for an appointment with a respiratory consultant and have had 2 skin biopsies and await the results.

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    • Posted

      Hi,i hope you get a diagnosis soon there's nothing worse than not knowing whats going on,feeling like your wasting peoples time,at least my troubles only lasted about 4 months before i was admitted to hospital.

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    • Posted

      Hi

      I'm going to the hospital tomorrow for possible uveitis. I'm not sure what that it is. I have sore red peeling eyelids, watery eyes and blurred vision sometimes.

      Kind of hope it's something, as you say you feel like a hypochondriac!

      Best

      Dee

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  • Posted

    Autocorrect! 🙄

    *xrays

    *mediastinal nodes

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    • Posted

      I was told that I have bilateral hilar enlargement however the right side is slightly larger. CT scan is Thursday. I visited my doctor for swelling on both ankles and knee pain on both. I then told her about my cough and wheeze. She sent me for a chest xray. Doctor told me all blood work is perfect, lungs are clear, just the two enlarged hilar. my mother suffers from Sarcoidosis, however the doc mentioned that it could be lymphoma because of the similarities. I am freaking out and would like to know if anyone else has experienced the symptoms and simliar discovery.
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  • Posted

    I’m so sorry for your ordeal, I know it’s frustrating. What is the next step? My advice is to take the most aggressive treatment they offer to get it under control.
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