In June, a CT revealed bilateral hilar and mediastinal adenopathy along with a nodule in right upper lobe. I underwent a lung and lymph node biopsy (via an open thoracotomy, thank you very much.:() and the pathology came back highly suggestive of sarcoidosis. I was referred on to a university hospital pulmonary specialist with more experience treating sarc. So far he has ordered a bone scan, more pulmonary function tests, echo, eye exam and blood work. Significant bloodwork findings included a SED rate of 39 (normal range is 1-15) and a positive ANA. My pulmonary specialist from the university hospital says that this is normal and nothing to worry about. She is also saying that the following bone scan results are nothing to worry about....????
The bone scan results were as follows...
Conclusions :
1. Linear activity in adjacent right posterolateral approximately 7-8th ribs favored to represent periosteal reaction. In the absence of postsurgical changes, underlying lung or pleural involvement by tumor is possible. If the clinical suspicion for this is high, chest CT or FDG PET CT may be useful in further evaluation.
I have had extreme pain in my rib cage following surgery. Just 3 weeks ago I had to go to the ER because the rib pain was excruciating. I thought for sure they had left something inside of me. So is this something that I should push the doctors to keep investigating?
And finally, how do I know if they are doing the right tests? A friend of mine was also recently diagnosed with sarcoidosis and was referred to a differenct university hospital where they did full body MRI's.??? I am new to all of this and finding it to be very discouraging. The docs seem to think this is no big deal...even the ones at the university hospital who are supposed to know more about it.
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