Wellness

[sm susie]

Anyone else out there have Sarcoidosis in places besides lungs? Mine was found in my lungs in 1980 (chest xray routine physical for new job). 5 years ago I had really bad pains in both sides of back, thought they were gonna tell me it was kidney stones. But nope, the sarcoidosis had spread into the abdomine along the Illiac chain (main arteries and vessels) and on the kidneys and had spread further in my lungs. This past January I was diagnosed with kidney stones (had very red urine), had them blasted. A few weeks ago I started having pains like it was stones moving and the sarcoid on the kidney pain. So, last week I had a chest to pelvis CT scan to check on the stone pieces and the sarcoidosis. The sarcoidosis is spreading again in the abdomine and my lungs are now probably more sarcoid than air space. So... this is what I know - in most people, Sarcoidosis goes away on it's own in 2 years max, NOT ME. People with bad sarcoidosis tend to create stones, ME. I have looked at hospitals throughout the US for a Doctor who can help me that isn't only a Pulmonary Dr. because that is all I can find and by now I can get an xray and monitor it myself! Now I go to my general physician and ask for ultra sound to make sure it isn't in my heart but they won't check my brain. These are the 2 places I believe are fatal. There is nothing online that is of any help, it again is all about pulmonary. DOES ANYONE HAVE THIS AND HAVE YOU FOUND A DOCTOR TO HELP? THANKS...S