I'm new to this...

Posted , 10 users are following.

Hi.  Two days ago I was told that my CT scan shows sarcoid and have my first appt with pulmonologist at the end of the month.  Besides that I presented with uveitis in both eyes and after being treated for pink eye for 4 weeks I finally decided to go to my optometrist and found out that it was most likely caused by sarcoid.  I have had a cough and fatigue off and on for a few months.  Any way, it seems like this group is more towards the positive side, with a splash of "venting and information gathering".  I really appreciate that because it seems that all of the other groups I've seen are so negative.  (Don't want to judge, I just want to be as positive as I can despite the circumstances).  Any suggestions you have for a newbie would be great.  Otherwise, I look forward to staying in contact with you all.  It feels like a lonely diagnosis and would love to have "friends" that understand what I am experiencing.  

1 like, 13 replies

Report / Delete

13 Replies

  • Posted

    It can be a tough road. I was diagnosed years ago and the disease constantly changes. It tough to find ppl that understand it from a health and medical point of view.
    Report / Delete Reply
  • Posted

    Hi

    It is a lonely diagnosis, I live in Australia and have never meet anyone other then my brother who has this condition.

    This forum has given me contact globally so I think it is great.

    Ask any questions as you go along and we will do our best to help.

    This illness is not life threating and should be viewed as a challenge.

    Keep in touch

    Regards

    Tangles

    Report / Delete Reply
  • Posted

    Thanks for your replies.  I appreciate hearing from you.

     

    Report / Delete Reply
    • Posted

      Hi sorry you were diagnosed with this. It does bary with intensity and reprieve a little at times. Its not too big for God and I pray for all. Your outlook is great keep positive. If you have a rough day, rest its ok. And rest on Gods grace. One day at a time and the way it came it can GO!!!!! Glad to hear from you. Have an great and grateful day for what is good 😉

      Report / Delete Reply
    • Posted

      Thank you for those uplifting and positive words and prayers. I really needed to hear that today..

      I have been diagnosed with Sarcoidosis October 2016 and it has been challenging to say the least. The flare-ups can vary. This time its effecting more than my lung. The Lympth nodes in my neck and breast, ovaries, etc (Giving false positives). They do I d a mass on my kidney that has to be removed in about a week. All I can do is take this one day at a time one step at a time.

      Report / Delete Reply
    • Posted

      I agree with you on this blog.  Lots of information and positive responses!  When my 17 year old son was diagnosed with Type 1 Diabetes I told him HE controlled it - not to let IT control him.  Since my diagnosis of Sarcoid I now have to take my own advice.  As I read responses on this sight I am so thankful that what I have could be worse.  When I told my cardiologist  I was glad the mass in my lung was not cancer but Sarcoid he said WHY?  Sarcoid is not a fun thing to have. I looked at the positive and said - I would rather have Sarcoid than lung cancer.  Always find the positive!  Thankful for all of your posts.  "I can do ALL things through God who strengthens me!!"

       

      Report / Delete Reply
  • Posted

    It is a lonely desease but this site gives plenty of information and positivity. I have had sarc for 2 years now. It has blessed me with uveitis in one eye and optic nerve damage in the other

    Steroid drops was the answer.

    You will find that people will brush you off with " that heals itself" and it can. But it can also give you bumps in the road. Just rest make sure your doctor REALLY listens to you and keep your head up. 😊

    Report / Delete Reply
  • Posted

    Got diagnosed 8yrs ago. Took 3 yrs to get diagnosed, was the best/worst thing I could hear. Not cancer/no cure/wait and see. Started in Lymph nodes. Doc said steroids and won't spread. Now on skin, nails and all nodes. Joints hurt. Hasn't stopped me from buying a house and having a beautiful daughter. Everyday is a blessing and some r a struggle. U r not alone. Sometimes I feel I should be grateful it's not cancer, sometime I feel it could be so much worse and sometimes I'm angry and bitter. Today was good. I will see what tomorrow brings.

    Report / Delete Reply
  • Posted

    Hi 👋 

    im very new too, still hospital actually! My blood tests have come back ACE I think the test was called with sarcoid showing 280, he had I re checked as he'd never seen a reading so high! I've suffering badly for about 6 month stuck house bound so considering the other things I was tested for being Addison's disease and MS I feel very positivite abpout sarcoidosis is something g that explains all my debilitating symptoms and something people really seem to be able to get a handle on with the right care so that's awesome!! 

    Im very excited to get my life back! I have a 2 and a 4 yr old who have lots of energy and a hate missing out on the,growing up! 

    Id love to hear all the positive things you have to say after starting treatment!! 

    Also of course having somewhere for a vent where your people actually understand too!!

    Thank you for having me smile 

    alicia - 32yrs - Australia 

    Report / Delete Reply
  • Posted

    Hi. Do you know what test they did to find out about your eyes? I have had sarcoidosis for 2 years now. Feeling better. First I was on 40mg of prednisone, now only 5. I am feeling that something is happening again though. I'm starting to cough a lot more and bones are aching. My eye doc is a great doc. He said most likely my eyes are because of sarcoidosis. Everything is a little blurry and I think there is some mucus like stuff in one of my eyes. Very scared about my eyes. 

    Report / Delete Reply
    • Posted

      Yes that's how my eyes are, it started with a gp who sent me straight to the optometrist who sent me straight to the eye specialist who comfirmed an infection and inflammation of the optic nerve. 

      So it's is just presumed at this point, the Neuro said it's quite common on the eyes and done some more tests, with electrodes attar he's to me head and staring at a bot with some black and white phycadelic backgrounds lol the messages were disrupted from eyes to brain after those. 

      Hopefully my PET SCAN results will be back today, they were expected yest

      erday or the day before. Meanwhile I'm testing well and doing 

      Report / Delete Reply
  • Posted

    MY first sign of the uveitis in my eyes was some things were black. We were golfing and I couldn't see the faces of the other people.   Optometrist said it was related to my sarcoid and it usually hits both eyes.  After being on steroid drops and close check ups it has gone away leaving a oily "bubble" I see through.  Last visit my other eye showed a spike in the optic nerve pressure so I'm on daily drops for that.   It's a little thing but I constantly watch for signs of it returning.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up