Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Hi Y'all, O.K. before I go into great detail I want to read all of your DX stories. How did you all know you had systemic sarcoidosis or neurosarcoidosis? Today.....to make a long story short.....Since I was DX 5 years ago I have been trying to figure out my neuro symptoms. I was being worked up for MS then my ACE numbers elevated and my lungs became sick again in the summer of 05--and all my neuro symptoms. I was not happy with my original Dr. and so I sought out an " expert " in field of sarcoidosis. Today when I saw him...he told me I did not have sarcoidosis and there was nothing else he could do for me. He said my ACE markers went down and my PFT (pulmonary function test) are normal---and so my symptoms could not be sarcoid related. Now if that is true--I am O.K. with that....but I don't believe it. So, can you have neuro sarcoid and have normal ACE levels? Please tell me your stories...I could use some " Your NOT crazy " ---but maybe I need to look at something else. Thanks, Janet Quote Link to comment Share on other sites More sharing options...
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