Looking for anyone that has been diagnosed with sarcoidosis - sm

For almost 11 years I have been experiencing random symptoms, stroke-like symptoms at times with paralysis in my face, tingling, numbness, weakness in my left arm, as well as pain in my joints, especially my feet, knees, hands and hips.  On top of this there are days when I ache, hurt and just feel so bad in general that I do not want to climb out of bed.  Two weeks ago I experienced another stroke-like event, ended up seeing a neurologist who ordered MRI (negative for stroke thankfully) and blood work.  My blood work returned abnormal with elevated white blood cell count (no infection noted anywhere), elevated sed rate and CRP.  Upon finding this she then ordered another batch of blood work, loads of it, and I received a phone call on Friday from her nurse stating that my serum ACE level is elevated which means that I have tested positive for sarcoid and she gave me instructions to see a rheumatologist today.  WOW, how shocked was I. 

Of course once I called the rheumatologist office this morning I find out that they do not have an opening for a new patient until July ... REALLY JULY??? 

Anyway, after my husband and I have researched sarcoidosis I am amazed to find that all of my symptoms over the last 11 years fall within this diagnosis.  I always assumed that my joint aches, fatigue, depression, etc., were associated with getting older (I am only 44).  Part of me is relieved to know that the mystery symptoms now have a reason for happening and part of me is terrified after things that I have read that other sarcoid patients are experiencing.  I realize that there is no cure and that the treatments can range from very high doses of prednisone to even chemotherapeutic drugs.  At this point I have been having symptoms with my eyes for about 6 months to a year and honestly I am scared to wait until July to see someone.  I have been experiencing horrible, horrible dry eyes, my vision itself has deteriorated severely, almost overnight even, I have black spots in my vision often and have noticed over the last 2 months an extreme sensitivity to light.  Again, all symptoms of sarcoidosis. 

Is there anyone else out there that has sarcoidosis?  Can you tell me how long you have been diagnosed, how you have been treated and how you are dealing with it? 

This is a scary disease, one, from what I have read, that not much is known about really and it seems to affect each person so vastly different. 

Thanks in advance!