Does anyone else have Sarcoidosis?

Does anyone else have Sarcoidosis? How are you coping with the disease......I'm on more medicine than I care to admit....and my breathing is not improving much.

THIS IS WORTH READING! I was diagnosed with it in 2002, following severe and sudden breathing difficulty, mostly with exercise, then with even just walking on level ground! After initial biopsy surgery, which followed three years of believing a doctor who was wrong, I was put on many different drugs, Isoniasid, Rifampin, Ethambutol, vitamin B6, as well as Prednisone which is supposed to alleviate the inflammation, but did not, or if yes, it only kept my condition from being worse than it was. You're probably, or should be, having pulmonary function tests every three months. That will tell your doc a lot about your condition. But BEWARE, your diagnosis is not the word of the almighty - I went to Yale Univ Med and the Mayo Clinic, both said no to Sarcoidosis, probably Bronchiolitis, and that the biopsy slides were insufficient. Now I'm off the Prednisone, and some better than before, but in my case, I also had a heart valve condition, now improved non-invasively. But I do still have breathing problems that require supplemental oxygen at night and sometimes during the day. Whatever you do, get a second, even a third opinion! My Sarcoidosis was diagnosed at Mount Sinai in NYC, then I went to Yale, then the Mayo Clinic. The best for lungs in the USA is supposed to be Denver Jewish Medical Center. You probably will need oxygen to fly. Good luck to you! canajo@yahoo.com

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