Fibrosing mediastinitis

I was recently diagnosed with Fibrosing Mediastinitis in October of 2019 when I was hospitalized due to 100% respiratory failure. When they diagnosed me the doctor shrugged his shoulders & said, " Well, we can't tell you anything about it because we don't know anything about it." And that was it. No questions answered, no information offered, no peace of mind, no hope. I'm desperate for some knowledge on my condition so I set an appointment at the mayo clinic hoping to get some resolve. My appointment is less than a week away...I will update this when anything changes.