Sarcoidosis,Fibromyalgia, and...... don't know ....??? Maybe, I never will know. I have been to a few doctors this past week and am convinced that Sarcoidosis is indeed a "Rare" disease. There are very few doctors who actually have a wealth of knowledge on this disease and even fewer who know how to treat it or what the prognosis will actually be for the patients who have this. For me, I don't like to have a "mystery" disease therefore I research as much as possibe. Why can't doctors do a little research for the benefit of their patient? I had one lung nodule removed from my right lung along with a wedge of lung. I still have a nodule in the lower lung and from what I have researched these will just continue to grow and form in other organs as time goes by. The center of my chest is painful and my lung feels as if there is a knife stabbing in there every time I inhale. The other chronic symptoms that apparently all go along with Sarcoidosis I have been having for a very long while but most intensely the past year. Headaches, muscle aches, joint and bone pain, night sweats, extreme fatigue, poor balance, eye problems, abdominal pain, flu-like feeling...and more. It is not a type of cancer but has been linked somehow to lymphomas. My Pet scan was back in May when I had started to have lung symptoms in April with severe chest pain, shortness of breath, pain under my right rib. The Pet scan showed up many lymph nodes. Of course the ones in the chest were biopsied and turned out to be Sarcoidosis. No cancer cells were found in those. The lung nodule was also biopsied and that also turned out to be Sarcoidosis. My diagnosis then was Sarcoidosis. It is highly unusual for lower abdominal lymph nodes to be involved with Sarcoidosis. This is the why of needing an oncologist to look at the Pet Scan to see what his opinion is. It would be nice to get some answers soon however, since this has already been since April, and if by some chance these lymph nodes are cancer I can't help but wonder if they are growing while all of this delay is going on?" Stay positive" is what my Drs keep telling me...how in the world is that going to give me answers? All I can do is wait for the next appointment and hope that my doctors will do some research and will be able to help me before I get too sick to care!
